Fall Updates

We have launched into fall in STL! The weather is beautiful right now - and we hope it stays for a while! Bella was amazed this morning at the park when she saw the red leaves on the ground, and I think this fall is supposed to be really pretty, so hopefully we get to see all the fall colors!

Norah's class had their first field trip last week - to the apple orchard. Bella got to go with the class and Brian chaperoned. They each got to pick a bag full of apples, bounce on the "big pillow", and went down the tunnel slide. Brian was amazed the girls went through the tunnel slide because it was on the side of a hill and enclosed. They both loved it though! That afternoon, we made an apple pie and 4 smaller pies for dessert on Saturday night. We went to a friend's house of Norah's on Saturday night and had a great time.

Norah is doing so well at school and has learned so much. I love the days she has music because she comes home with new songs! This year is great because at the end of the school day she tells us things that happened throughout the day - games she played, things she learned, work she did, it's so wonderful to see her so happy!

We found out there is an EA/TEF program at Boston Children's Hospital. I talked to the doctors last week and they would like to see William to try to help with some of the issues he is having. We gathered all films, x-rays, and photos of William's surgeries and studies and sent them to Boston. They would tentatively like to see William near the end of October to run more studies and possibly have surgery based on if they find anything that is operable. We're praying everything is okay and that God helps us make the right decisions for William.

Bella is having her birthday party this weekend and is so excited! She turns 3 - 3! - in October. I can't believe she is already 3 :) She's doing such a great job at potty training and makes me laugh daily by things she says and does. Brian and I are convinced she'll be in theater or dance because whenever she is elevated - a sidewalk, a curb, a bump in the parking lot, a log - she treats it like a stage and sings and dances!

1st Day of School, 1st Haircut, and Baptism

The month of August and the beginning of September has been busy for us! Norah started school again in August and LOVES it this year - no tears!! She has the same teacher as last year which has helps a lot. She has a few of her friends in her class again this year because the Montessori Preschool classroom is 3-4 year olds and you can also choose to have your child in Montessori Kindergarten which are the 5 year olds. All of them are in the same classroom but they have different work they do based on Preschool or Kindergarten.

School as been wonderful for both the girls - they love being around each other when they are both home now. It's also been great for Bella because she's loved being the bigger sister at home and really enjoys helping with William.

First day of Preschool - our big girl is already 4!!

Norah and Bella - happy and full of "First Day of School Chocolate Chip Pancakes"!

Norah, Isabella, and William

Isabella had her first haircut last weekend! We were worried her curls might disappear when she got it cut; but it made her hair even curlier! She was such a big girl and sat so still during her haircut. Afterwards she and Norah got to have suckers while I got my hair done. It was such a fun day with "just us girls" and I think the girls have a new favorite thing to do on our day out!

Big girl Bella - she looks so serious!
All smiles!
Norah sitting so still - such a big girl!

Out to lunch for "Girls Day"

Sweet Girls - enjoying the salon!

This weekend we welcomed William into the Church family through his Baptism. We asked my brother, Paul, and Brian's sister, Elizabeth, to be William's Godparents. Our families were there and William was so wonderful throughout the Baptism.

Since we had to wait a few extra months for the Baptism, he wasn't able to wear the Baptismal gown that has been in my family for over 100 years. Generation after generation have been baptised in the gown - so William wore it draped over his Baptismal outfit. All three of the children were able to have the gown for their Baptism.

Elizabeth, Paul, Fr. Meyer, Brian, William, and Emilie

William, Brian, Emilie, and Fr. Meyer

William getting Baptised

Blessings

Through the modern age of technology - namely Facebook - we've been able to join support groups of parents (and adults who have EA/TEF and Tracheomalacia) of kids who have EA/TEF and Tracheomalacia. I didn't realize how much emotion I've been carrying around until we joined these groups. As awful as it is to know that other children have to deal with all of these health problems, there is such a sense of relief to be able to talk to other parents about similar issues we have and just to know we aren't alone...that William is "normal" in some sense of the word.


One of the groups is specifically for the Tracheomalacia and parents post videos of their children at various times throughout the day - playing, sitting still, eating, after eating, after a spell, etc... After we listened to a post of a baby girl after she nursed - tears welled in my eyes because William makes the same sounds - and I'm constantly questioning if it's a normal sound for him or does it sound wet? does it sound like aspiration? can he swallow okay? Something as simple as a cough now has 10 other meanings to us and is cause for concern.

I also know William is blessed and is very, very lucky because he doesn't have so many of the other symptoms that can be associated with EA/TEF. As hard as it is to have a baby with special needs, I constantly thank God for William. He is such a happy baby and brings an instant smile to our faces. I cannot imagine my life without him; he was always meant to be here....which is the same way I feel about Norah and Isabella. We, as parents, have been so blessed with the three children and we thank God for them daily.

Cooler weather

The weather has finally gotten cooler in STL! We had beautiful weather starting last week and it's continuing this week. It's great to get back outside with the kids and let the girls run around. I also think William enjoys the fresh air - he seems to sleep better if we can be outside during the day.

Two weeks ago we went to Grant's Farm with Haley, Larry, and their kids. It was a perfect day and the kids had so much fun. Last week we went to the zoo and the weather was even better! We visited the stingrays and sharks - Norah was willing to put her hand in the water - but not willing to try to pet the animals :) Bella surprisingly wouldn't put her hands in the water! For the first time ever, we were able to make it all the way around on train without tears in the tunnels!

We went to the park this weekend and played soccer with the girls! We had a lot of fun and they loved playing a game just as much as they loved playing on the playground. William enjoyed the walk and the weather - he cooed and slept throughout the morning. I'm looking forward to fall weather so I can carry him in the Moby Wrap - it's nice to be able to move around easier without the stroller, but for now - with the heat and the strong sun - the stroller is best.

Norah starts school next week - she is so excited! We go this weekend to Open House and we're excited to see her teacher and her friends. I think it will be good for the girls to be separate during the day - they seem to get along even better when they aren't together all day long, everyday. We're lucky that - for the most part - they get along really well :)

I think Bella will like to get to be the only big sister home during the day. She loves helping with William and talking to him.

William is growing so much! He is now on demand feeding all the time :) and he's taking roughly 25% of his calories orally. That is such a huge improvement from where we were a month ago. Thanks to his nutritionist, feeding time is enjoyable for him (and us!) and more "normal". He is learning how to nurse better and doesn't need my help regulating as much as he did a few weeks ago. He's trying really hard to laugh and is so close! He is also cooing and mimicking a lot. Poor little guy has started teething and it's causing some problems for him with all the extra secretions and pain. Hopefully the teeth/tooth comes in soon and he can have a bit of a break before the next one comes in.

William is still having "blue spells" - he turns scarlet roughly every other day/every day and has been turning blue about once a week. He started breathing treatments, but those haven't seemed to stop the spells. They have helped with some wheezing he has occasionally. He has follow up appointments next month, so maybe we'll know more then.

We wish everyone a good start to the school year and hope everyone is enjoying wonderful weather like we are :)

Sweet William - pouty face right as I was bending down to pick him up

Norah, Daddy, and Bella playing soccer

Norah - she's getting so big so fast! She learned how to swing by herself this summer!


Our beautiful children (yes, I'm biased!)

Mommy and Bella

On a hot, hot, day in July...

This has been a relatively uneventful week :) which by our standards is a very good thing! William's visit to the cardiologist went well and he has a healthy heart. Yea! The downside is William still has "blue spells" and so far adjusting his feeding isn't stopping them. We decided to try the antibiotic route the GI doctor suggested. He'll be subjected to the same amount of antibiotics as if he had an infection. I've read other accounts of children going on this to help with gestational motility, so we'll see if this helps.

It's still REALLY hot in STL so we've been forced to stay inside. Norah and Isabella have been so good even though they've not been able to be outside much. On Saturday, we celebrated Abigail and Jenna's 2nd Birthday and it was a lot of fun! Norah and Bella got to play outside in the kiddie pools and slip-n-slide and make cute flip flops. William hung out with me and was happy there was a ceiling fan to look at as well :)

The weather is supposed to cool down over the weekend, so hopefully we can get some outside summer photos to share!

William loves being on his back -something we just realized because he hasn't been allowed to lie flat. He "dances" and talks so much when he's on his back!

Two mommies :)
Sweet Daddy painting toenails for his little girls.

Three beautiful children :)

Summer

Summer heat has come to STL! The past two weeks have been really hot and this week is no different. (100 plus!) Soo...we're inside most days which makes it hard to have energy burned off for the girls! Luckily, the weekends haven't been as hot as the weekdays and last weekend we were able to get outside and celebrate our good friend Angie's 30th birthday party! Her family threw her a surprise party and Angie was very surprised :) It was at the Millstadt park and was a lot of fun.

Norah and Isabella got to play with bubbles, t-ball, badminton, and kites! They also invented a fun game ;) of running around the field with a jump rope - imaginations are a wonderful thing!!

William enjoyed the warm weather and slept through the party. It was fun to go out as a family - the first time we've made it out as a family of 5 other than to doctor's offices, the hospital, family, or friend houses - and we hope we'll get to get out a little more before summer is over!


Daddy, Norah, and Bella flying a kite.
Mommy, Norah, Isabella, and William
Norah and Bella blowing bubbles


We've been visiting a lot of doctors for William lately. He is having a hard time with turning blue after he spits up or refluxes sometimes. One of the GI doctor's suggested we try lengthening his feeding to 2 hour feeds (vs 1 hour) or medicine. Since he's on a few medicines already, we preferred to try to extend his feeding to see if that helped. Unfortunately, he was just hungry the whole time and was very, very upset throughout the feeding. After trying it for 2 feeds, we went back to 1 hour feeds. Before we try medicine, we're going to visit a cardiologist to see if the hole in his heart closed. The GI doctor said that might be why he has a bluish tint to his skin sometimes.

We also started William's First Steps therapies this week. We have a wonderful OT/Feeding/Speech therapist and a wonderful nutritionist who each come once a week. Since feeding is the most difficult time for William right now, they are both helping to work with him and us to make that a better experience for him. It's really hard when something so fundamental to life is so difficult for your child. All you want to do is help him through it so he can be comfortable.

It amazes us how happy William is (when it's not a feeding). He started smiling and cooing the past week!! It's so much fun when they start to do that! In one of the picture's below, you'll see him looking at one of the animals on his bouncy seat. It's a lion and Norah and Bella loved it too! He loves to talk to us and smile at all of us and has the best expressions when he is cooing. It looks like he is taking after his sisters and will be a talker :)

We're so lucky to have such wonderful children. Norah and Isabella love helping with William and especially love holding him, singing to him, and playing with him. Brian and I were slightly concerned how welcome William would be, but both girls adore him so much. It's interesting because to them all of William's health issues are typical for a baby since they don't know anything else. When they play house, they keep a bulb syringe next to their babies "in case they spit up"and they feed their babies through a g-button! Most of all, they love on their babies, which makes any parent feel good!


William asleep at Aunt Haley's
William talking to the animals on his bouncy seat. All three of the kids loved the lion the best!

Summer Fun and Other Going Ons...

We've had an interesting couple of weeks. Last week, William had two episodes where he stopped breathing. The first was on Tuesday night after his 6:00 pm feeding and he spit up and started to turn blue. We sat him up straight and he turned pink again and was okay. On Wednesday morning, during his 9:00 am feeding (51 ml - I'll always remember that number) he spit up and turned blue. I always thought when people said someone turned blue, it was a figure of speech - but it's not. There isn't an in-between color - it's blue as blue can be. I sat him up like we did the night before, I turned him over on his stomach against my forearm and hit him on the back to try to force anything out, and nothing happened. I told the girls to go to their room, ran to hit the fire button on the alarm pad, and opened the front door. I laid William on the floor and tried to stimulate him, nothing happened so I blew one rescue breath and nothing happened, I blew another one and he coughed and sputtered and started to breathe - Thank God.

By this time, there were all sorts of alarms going off - the house alarm, the apnea monitor, and the feeding pump. It took me a minute to realize all of them and to turn them off. The firemen came and the EMT checked William's lungs and said they were clear. They offered to take us in the ambulance, but since he was pink and breathing, I declined. I called the ENT's office since they told us to call if William stopped breathing and, after scaring the nurses, I was told to take him to the ER.

Brian met me there with William and the girls (who were amazing this whole time and did such a great job of listening. I am so proud of them!) and Brian's parents came to take the girls so they wouldn't have to stay at the hospital since we didn't know how long we would be there. It turned out, the doctor's wanted to keep William there overnight for observation.

On Thursday, we were able to take William home as he didn't have anymore episodes. They aren't sure what happened, which makes it hard to know how to prevent it from happening in the future.

Thankfully, he has had a good week since then and hasn't had any problems. While in the hospital, they put him back on formula, which has upset his stomach again. It's a new formula and seems to be better than the previous one, but it still causes him discomfort.

It amazes me how happy he is though! He is gradually getting to be awake more and more during the day and spends that time cooing and working on smiling (almost there I hope!!) at us. He especially loves looking at his big sisters, who in turn, love being around him and want to hold, kiss, and touch him as much as possible!

Norah and Isabella are doing great. They are loving summer in ways only kids can do - just the simple joy of playing with a water hose or swimming in the kiddie pool - makes them so happy! So far, the weather has been nice enough that we've gotten to spend at least some of the day outside at the park or in the backyard. This weekend is going to be hot but hopefully it will cool off a little next week and we can get back outside!

I hope everyone has a safe and happy 4th of July weekend!

Love,

Em


One of my favorite pictures of our sweet baby - here is his beautiful smile!

Big girl Norah - climbed the rock wall all by herself!
Norah, Isabella, and William celebrating Canada Day!
Bella playing at Kirkwood park in the sprinkler - we used to play as kids too - and both Norah and Isabella LOVED this!! We now call Kirkwood park the Sprinkler Park :)
Norah and Isabella playing with the pink (we also have purple) sand Mimi and Papa sent
We have such happy children!
Cute as a button
Norah and Isabella playing in the kiddie pool at Grandma and Grandpa's
Bella on the swing at Kirkwood