Winter

We are in full swing of Christmas "fever" at our house! Norah and Isabella are so excited for Santa and this month has been challenging for them to say the least :) We had a great surprise one night - some of our cousins came over for dinner and Santa stopped by!! He brought each of the kids a small gift and for the first time ever Bella sat on his lap! Norah sat on Santa's lap a few weeks ago which was the first for her as well! They are getting so big. William loved Santa - especially his beard!! The kids were so excited and had such a great time.

We had a rough week last week at home. William went down for bed and, from what we can tell, refluxed and stopped breathing. It took 3 rounds of compressions and rescue breaths to have him start breathing again. By the time the EMS team got here, he was breathing, but he had a really hard time coming out of his spell this time. William and I took our 2nd ambulance ride to the hospital and he spent the night in PICU for observation. The next day, they released him - which wasn't too much of a surprise because he had been doing well since midnight the evening before. It's hard because they don't know what to do to help but they can't just let him go home after what he went through.

After visiting with his GI and Surgeon; a few things have changed and we have a tentative plan of action depending on what happens. They switched his main reflux medicine to Nexium which is the next step up for reflux meds. Hopefully this works because if not, the next step will be to determine if a surgery called a nissen fundoplication will help. (Basically they tie the stomach around the esophagus to create a knot of sorts.) This is supposed to help with reflux but it can cause other problems which is why we've been hesitant to look at it as an option. However, the complications are not worse than his dying spells; so it is the better option if it is necessary.

Right now, William has an endoscopy and bronchoscopy scheduled for January 5. They will look to see if he has a recurrent fistula (he has been coughing during feeds) and will dilate his esophagus again. Depending on how things look and how they go, he might have another dilation later in January.

Since his aortopexy, he has been doing great - with the exception of last week that is. He started rolling over and realized yesterday that if he keeps rolling he can get closer to the Christmas tree :) He also can sit up for longer periods of time unassisted - a few minutes for him - but that is a big improvement! He's such a happy baby since his surgery that it makes us realize how starved for oxygen he must have been.

Norah and Bella are doing great. They amaze me daily with their sensitivity and kindness to William. It also amazes me how flexible they are - we have a medical pole for William's feeding pump that we moved the other day and they used it to play with their dolls - apparently their dolls were in the hospital because their throats don't work. (That's how we explain William's problems to them) I am so thankful for their health and well being. I wish things could be easier for them and they didn't need to see so much of a hospital; but God has a purpose; maybe we have a future doctor or nurse on our hands!

I know I need to upload photos of our beautiful children (yes, I am biased!). But for now, I wish everyone a Merry Christmas!

Surgery

Last week was a long week for the Overberg family. On Sunday night, William stopped breathing and I started CPR while Brian called 911. After 1 and 1/2 rounds of compressions, and 1 round of rescue breaths, William started breathe again. We went by ambulance to Cardinal Glennon and stayed the night for observation. It was to the point where I wasn't sure the CPR would recessitate William; I thought I would only maintain him until the paramedics got here. Thankfully, he came to and was okay by the time they came.

On Monday, William was scheduled for a CT Scan to see if his aorta was compressing his trachea - the surgeon wanted to confirm before he performed surgery. After the CT Scan results came in, the surgeon decided to move his surgery up to Tuesday (it was scheduled for Wednesday).

Tuesday was a long day waiting for surgery. William was a trooper and made it all day without eating - thankfully he slept most of the day. Brian and I took him for a walk around the floor late in the day and he made lots of friends with the nurses! At 6:00 we went to the OR waiting room and handed him to the surgical nurse. Even though we knew the surgery was needed and we knew it was a level 1 heart surgery; it's still hard to hand your child to a surgical nurse.

At 7:30 we received an update from one of the nurses that William was out and they made the incision. At 8:22, the surgeon came out and told us he was done and William did great during the surgery. He did a bronchoscopy before and after the surgery and it looked like the surgery was successful. We won't know for a few weeks after surgery - due to swelling and irritation of his trachea - if the surgery will help his blue spells. (Something we learned while in the hospital was that blue spells typically mean a spell where the child holds their breath, passes out, but comes to on their own. William has dying spells - he needs assistance to start breathing again) After the surgery, William went to PICU to recover.

Tuesday night was a quiet night for William but Wednesday was a tough day for him. He had 4 more spells and was given a light sedative that wouldn't affect his breathing and would keep him off the ventilator. This helped him to sleep throughout most of the day and recover.

William did well the rest of the week and on Friday, he was released from PICU and got his own room :) He had a restless night but was doing well so on Saturday, he got to come home!

Tomorrow it will be 2 weeks since his surgery and he has been doing so great. The aortopexy has made such a huge difference in his life - he can breathe without straining and being dusky or turning blue. He can sit up for longer than a few seconds and is so happy!!

We can't thank our families enough for all the support they gave during his surgery week. Norah and Bella had a great week and were surrounded by loved ones - which helped it be much less scary for them. We love you!

Surgery

This Wednesday, William will have the aortopexy surgery at Cardinal Glennon in St. Louis. We found a surgeon there who was highly recommended by William's pediatric surgeon, the doctor who treated Brian when he had leukemia, William's OT, and has performed the aortopexy on another child we know through the EA/TEF community. His name is Dr. Huddleston and he was at STL Children's up until a few weeks ago. We met with him last Monday and were encouraged with the information he gave and feel it's the best decision for William.

One of the big reasons we chose Dr. Huddleston is that Dr. Coln (William's ped. surgeon) can do surgery at Glennon too - and he is able to perform the dilation we heard about at Boston Children's. So, Dr. Coln will go in first and cut a "shelf" that is part of the scar tissue in the esophagus and then Dr. Huddleston will go in and perform the aortopexy.

The recovery time frame is typically 3-4 nights in the hospital with careful care at home afterwards. Hopefully all goes well and William is home by next week.

We appreciate all the prayers and ask that you continue to pray. They mean more to us than you know.

Going Home!!!

We received wonderful news this afternoon that William was able to be released. Thanks to his amazing nurse (Kathy had him yesterday and switched with another nurse to have William today!), the doctor's agreed to have him stay until 6 pm this evening (24 hours after the blue spell). The surgeon had genuine concern over letting William go home as his Tracheomalacia is considered life-threatening. Since we've been through numerous blue spells with William and are CPR certified, they agreed to release him.

We are heading home tomorrow and are going to meet my parents in Niagara Falls for the night. It's on one of the routes home and will be good to see them!

Brian has already been on the phone talking to surgeons about the aortopexy and the 2nd dilation. We met one surgeon we both liked at STL Children's who can do the aortopexy but we haven't talked to anyone yet about the type of dilation the surgeon in Boston suggested. If it can't be done in St. Louis, William and I will head back and have the procedure done here.

We are so grateful to the Lord for the guidance he gave us by directing us to such an amazing team of doctors. We feel like there is a good plan ahead for William to be able to breathe better and not have so many troubles down the line when it comes to eating. If it weren't for the knowledge and specialization of the team at Boston Children's; we wouldn't be in this new position.

As Brian mentioned, we are extremely thankful for our families and friends for their continued support for our family of 5.

William's Day of Procedures............

To those of you who read this regularly you may notice a different writing style and that is due to the fact that Emilie is not writing this post, it is her wonderful husband doing so……….

Today was William’s day of procedures as he had a scope done of his trachea, esophagus, and GI tract. He also had his esophagus dilated due to the narrowing or “stricture” at the sight his esophagus was originally repaired. The procedure started around 8:30 am and he was brought up to NICU around 10:30 am as he was beginning to wake up from the anesthesia and was complaining quietly as he was wheeled in.

After they got him more or less settled in he began to wake up more and get back to his old self as he managed to remove his own IV causing quite a mess as well as kicking out of his pulse-ox band all while making countless friends on the floor. I have to give him credit that given everything he has gone through already he has to be one of the happiest babies out there and he knows how to use his smile already to win everyone over.

As a result of the procedures it became clear that William will more than likely need to have the aortopexy surgery to help open up his trachea as it was collapsing on itself even while he was calm. He is also going to need to have at least 2 – 3 more dilatations of his esophagus in order to help him as he begins to eat more solid foods. Fortunately these procedures can be done back home while the chance still exists for another return trip out to Boston further down the line.

While William and Emilie were at the hospital, the girls and I went for their first taxi ride to the hospital which was a thrill for them, although it lost out to the ferry and subway ride (we will post about that later with pictures) from yesterday. The girls have been great given the complete state of chaos this trip has essentially been as we have been gone since last Friday and they just keep up just as if this is normal for our family.

We are hopeful that William will be released from the hospital tomorrow, although he did have another blue spell earlier today and they mentioned that may cause them to want to keep him another night as a precaution but we will have to see what ends up happening with that. Ideally we will be packed up and back on the road on Friday but that remains to be seen.

I did want to say too that we have been truly blessed with the support we have received from both our family and friends throughout everything. Those thoughts and well wishes, along with the endless prayers have gotten us through a lot and made what could be a very trying and stressful situation easier to go through.

Until the next post, PEACE OUT…………………………………………………….

Finally in Boston

We made it to Boston! We had a really good trip here; the first night we stayed in Columbus, OH with one of my brothers, and the second night we stayed in NY. Even though we encountered our first Nor'easter; we lucked out because the area the snow hit was farther east than we were at the time and by the time we got there, the roads were perfectly clear. A lot of people in NY and CT are without power though - roughly 3.1 M - so a lot of people are at the same hotel we are...which is nice because there are a lot of kids!

The kids did great on the drive - we stopped about every 2 hours - and thankfully, William loves traveling and slept a lot. Norah and Bella did great - thank goodness for portable DVD players!!

Today was a long day at the hospital. We started at 9 with all inpatient admitting - we saw nurses, an anesthesiologist, and general check in people. That lasted about 2 hours. Then, William had a chest x-ray and a swallow study. He was not a fan of the barium liquid he had to swallow and had to be given it through a syringe to finish the test. The team got to see what they needed to see though, so it was only done once. Then we met with Dr. Jennings (the surgeon and head of the EA/TEF team), Dr. Klein (respiratory doctor), Dr. Manfretti (GI doctor), and a few nurses.

On Wednesday, William will be admitted to the hospital and will go under anesthesia for a bronchoscopy (a scope of his trachea, larynx, and bronchi), a endoscopy (a scope of his esophagus), and a duodenoscopy(a scope of his GI tract).

William has a stricture where the initial repair was operated on, which is scar tissue. They will do a dilation on Wednesday while William is under anesthesia. Over the next few weeks, he will get 2-3 more dilations (In STL) so the area doesn't close up immediately.

There was one other area where the doctor's saw a narrowing - the sphincter between his stomach and his esophagus. This is typically slightly narrow, but his looked unusually narrow so they are going to take a closer look. They said it could be because of his anatomy or because of his reflux problems.

William will stay overnight in the ICU after surgery as a general precaution (thankfully, I get to stay in his room). Barring any complications, William will be released on Thursday.

Thank you for all the continued prayers, we appreciate them. We'll let everyone know how Wednesday goes.

Love, Emilie

(I will upload Halloween pics later!)

Boston Bound

Tomorrow we leave for Boston so tonight is a rush to get everything washed and packed. We are nervous and excited to meet the doctors and for William to have the studies completed. I am praying for answers to some of the problems he still has and hope there are safe solutions for him!


We have appointments set up for Monday and Wednesday - on Monday he has a swallow study and we'll meet with the team of doctors. On Wednesday he will be anaesthetised and have the bronchoscopy.


We're going to try to make the trip a small vacation for the girls too - so they are excited rather than nervous now...which has helped a lot!


Thank you for all the prayers, like everything else medically with William we're anticipating what we know is possible but preparing ourselves for the unknown.


Love, Emilie

6 Months Already!

Our sweet William turned 6 months old on October 18 - he's getting so big! He's cooing and trying to talk - even more so than his sisters did at this age :) I think he might speak before they did just to keep up with them. He has rolled over multiple times - from his belly to his back - but that is a big accomplishment for him since he doesn't get a lot of tummy time. (Because of his severe reflux, it bothers him to be on his back and tummy for a long time) Ellen, his OT, says he is doing really well though - he's meeting all milestones for his age! This is also really great because he isn't expected to catch-up until he is 1 year old - yea William!!




When we met with William's surgeon, he let us know that since William hasn't used his g-button in almost a month; he can remove it! He wants to leave it in just in case William has surgery because that is how he will eat, but once he is completely orally fed for 1 month - it will come out :)

Sleeping is something William struggles with, so hopefully after we meet with the doctor's in Boston, we'll have a better plan of action...or we'll continue to drink a lot of coffee! We are so blessed with our children and love seeing God shine through in them. He has given us 3 amazing gifts and our lives will never be the same.

Pumpkin Patch 2011

We went to the Pumpkin Patch we've been going to since Norah was a baby this month. It's so much fun and they have a lot of great kids things to do. Norah and Bella had a lot of fun picking out pumpkins and stickers to decorate them :)

Me with our "little monster"

Scarecrow Bella

Scarecrow Norah
Of course - scarecrow William :)
It's very hard to get three little ones to smile when there is so much to look at!

Isabella turns 3!!

I can't believe our Isabella is 3 already! Time has flown too fast and she is growing up so quickly. I love seeing her grow up but it makes me sad at the same time because I love her so much!! (I do feel the same way about Norah and William!)

We celebrated Isabella's birthday in our family style - twice :) She had a birthday party with the WHOLE family at the beginning of October outside at Bee Tree Park, which was fantastic! We couldn't have asked for better weather and she had so much fun. Her cousins came and she had aunts, uncles, and grandparents there. We made caramel apples and played on the playground....everything a 3 year old loves!

We celebrated just the 5 of us on her birthday...to quote Bella : "We're going to my birthday party at Red Robin!" which is her favorite restaurant (because of the balloons!). She was so funny - she looked so forward to the waiters singing to her and bringing her ice cream. After they sang and left, she looked at me with those huge brown eyes and said " They didn't sing Happy Birthday to me...will you sing to me?" I said they did sing and you're eating ice cream :) She let me know they didn't sing "Happy Birthday to You, Happy Birthday to You..." so we sang to her - Mommy, Daddy, and Norah (William cooed) and she lit up! She makes my heart swell with happiness!!

Here are a few pictures of our sweet Bella.

Isabella Rose - on her birthday three years ago

Bella opening her favorite birthday present from us - new shoes!!

Sweet smiling birthday girl!

Norah helping Bella open presents
Eating her birthday lunch!

Postponed...

Well, our trip to Boston has been postponed until October 31. The reason his appointment was rescheduled is that originally the surgeons in Boston were going to do surgery immediately following the bronchoscopy. We wanted to have an evaluation done instead which would include the bronchoscopy but not have surgery immediately following. Since there is a backlog of surgeries, they needed to give William's surgical spot to someone who needed surgery and we'll have an evaluation on November 1 instead.

We are trying to do as much research and have as much information at hand before our trip. We were able to find, through a long series of doctors and surgeons, a cardiothorasic surgeon at STL Children's who can do the aortopexy. The aortopexy is a surgery that will take the aorta and pull it towards the sternum and attach it there. This will relieve some of the symptoms of tracheomalacia William has. Tracheomalacia will not be corrected with this surgery, the only way it corrects is over time and hopefully by the time William is 5 or 6, his trachea will have hardened and be able to stay open by itself. The aortopexy won't be reversed and should not cause any problems as he grows.

The other surgeries the surgeons in Boston have told us about are if there is a recurrent fistula (the connection between the esophagus and trachea) and if he has a laryngeal cleft. We met with the pediatric surgeon who did both of William's surgeries at St. Johns and he is able to correct the recurrent fistula (it's unlikely William has one as he has no symptoms of this) and his ENT can do the laryngeal cleft surgery if needed.

We're eager to meet the surgeons in Boston so the tests can be completed and we can make a decision for William. We would prefer not to have him go through another surgery, but if it's the best thing for him and will relieve his blue spells and breathing problems, we'll do whatever is necessary. We're praying for God's guidance that he will help us make the right decision as to if William should have surgery and if so, who should do surgery.

Thank you to our families and friends for all their support and endless conversations to help us make a decision! We are so incredibly blessed to have such an extensive support system.

We'll keep everyone updated. (As a side note - I have some more "fun" blogs to put up and will try to do that this weekend!)

Love, Emilie

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

Summer Updates

Starting last week, William began his first round of doctor appointments. On Friday, the OT/Feeding/Speech therapist came to the house for his initial assessment. This is scheduled through First Steps - which is a state run program that assists children who have special needs. So far William will have an OT/Feeding/Speech therapist (she is specialized in all 3) and a Nutritionist. We've also asked for a PT to evaluate his motor skills to make sure he is on track. It is a great program and we met with our family coordinator two weeks ago. She will go back to the team and develop a family plan with the team and us to help William meet developmental goals.

The meeting on Friday went really well and so far William is doing really well skill-wise. He behaves like a 2 week old (now 3 week old) with the exception of the feeding/eating issues. She had a few exercises we can do to help him strengthen his neck muscles which will hopefully strengthen his ability to swallow properly. We've also been doing the exercises they taught us in NICU - so between those, we're doing what we can at this point.

We meet with his nutritionist from First Steps on Monday for his initial assessment. Between her assessment and the information we received from the GI doctor's nurse practitioner, it seems everyone is on the same page - waiting for next week's swallow study to determine the next steps for major adjustments in the feedings and what to do now to help him with current feeding issues.

William is still really uncomfortable during his feedings so they changed his medicine and adjusted his volume of food. Brian and I both think there seem to be a few things going on during his feedings - gas, reflux, and the pain of being hungry and not getting full fast enough. Hopefully the new medicine will help with the reflux pains, and the volume should help with the hunger pains. William is able to do 1 on-demand feeding a day :) which is great because that should also help with gas and hunger issues. We've been feeding him if he gets hungry at the 2-1/2 hour mark, but sometimes that is more frequent than others and starting this week, he's actually sleeping longer at night and going past the 3 hour mark for a feeding! (Any parent reading this understands the joy that extra sleep brings!)

Unfortunately, he is getting granulation tissue around his g-button site. He's had two silver-nitrate treatments to kill the excess skin growth so the button can lie flat. It really seems to bother him, both the presence of the granulation tissue and the removal of it, but after the initial 24 hours after removal - he is happy again.

Overall he is doing really well. He has been gaining weight and is tracking more and more. We've been lucky enough to get outside to the park and for walks, which I think he really likes. He's definitely a true St. Louisian - he loves the heat! He is most comfortable when all bundled up at home and even though he wears a short sleeved onesie on walks, he likes the warmth of the air around him. I did some research and found a great baby carrier - Moby Wraps - which is one of the fabric wraps to carry him around. His therapists recommended we look at them since he likes to be so close to us. It is fantastic! He is all snug and safe and I can have both hands free. I wore it today to the park for the first time, and it was great to be able to snuggle with him and have my hands free to push the girls on the swings and play with them. I recommend them to anyone!

Norah and Isabella are enjoying summer to the fullest! They love getting out to the parks and had such a great time last week when we went to Kirkwood park. Kirkwood has this great sprinkler that runs in the summer. I remember playing in it as a kid and it's great to have our kids play in it too! Kirkwood park is also great because it's shaded all day - so we can spend more time there especially in the mornings, which makes them oh so happy!!

I'll post some pictures next time - until then, have a great week!

Park Trip

This weekend, we went to the park before the weather got too warm. Part of the reason was for me to take Norah's 4 year old photos - still unbelievable to me that she is 4! The other reason was just to get some cute pictures of the kids and let them enjoy the playground.

Enjoy our photos!
Norah - one of my favorite pictures of her - our sweet 4 year old

Isabella swinging - one of her favorite things to do at the park

Norah on the swings - contemplating swinging higher!

William wearing his cute plaid shirt and gazing up at the sky

This picture cracks me up and I think captures Isabella's spirit!

Sweet William puckering his lips

Norah and Isabella being nosy (they were watching another little kid play) but is such a sweet picture

Isabella with her beautiful hair flower and a telltale sign of a toddler - band-aids on the knees

Norah done with posing and ready to play!