An Early Christmas Gift

Sometimes selecting a gift for someone can be really difficult (like for my husband, but I digress). This year my mom knew the perfect gift for me... some good old fashioned help from mom. My mom flew down last weekend and spent two days doing whatever I needed to her to do. She cleaned out our garage freezer/fridge which stopped working while FULL of food (yuck!), made homemade strawberry jam (yum!), finished decorating my garland (looks so good now), held Crewe for hours on end while he had a fever so he could sleep (I got a snooze, too!), stayed with Crewe so Chris and I could attend church together, and more. Thanks, mom, for one of the best gifts I've ever received.

As a bonus, Grammy got to do Christmas with Calahan and Crewe. Here are a few shots from Grammy's visit.

Reading the fun new book that the boys just unwrapped.

Cal checking out his (and Crewe's) new little people nativity set. This is SO cute. His favorite piece is Mary. He loves that she is wearing blue.

Opening his gift from Nana (great-grandmother). It's a darling santa night light. He loves looking at it every night.

Our Little Crewe is Back

Crewe is finally feeling like himself again! Thanks to a powerful antibiotic, he has almost completely kicked whatever bug has been bothering him. It was an awful bug that ultimately led to another high fever and an ear infection. He's been vomit free and happy for almost 48 hours now. And the best part is that he slept in his crib last night until 5:00 am. I'm so glad our happy little guy is back. Just in time for Christmas.

Crewe's Sclerotherapy Postponed Again

Sometimes I wonder if achieving world peace is easier than getting the schedules of various doctors to line up. Going under anesthesia is no small thing for Crewe so we try to arrange multiple procedures/tests the same day so that he only has to go under once. In addition to sclerotherapy, Crewe has needed to have another laryngoscopy. The stars had finally aligned for both procedures early yesterday morning. 

It was the usual drill: No food after 11:00 pm. Leave the house at 5:00 am. Check-in at Phoenix Children's at 5:30. Wait. Wait some more. And then the unusual part -- Crewe has a fever. A fever means NO procedures. Argh. He's been so uncomfortable for the past 10 days, and I was really hoping the largyngoscopy would provide some clues. 

Crewe's ENT did agree to give him a local and remove some of the granulated tissue around his stoma (hole where they trach tube goes into his body). Crewe is definitely sore, but his coughing of the past 10 days went away almost immediately. For the first night in over a week, we both slept last night for more than just an hour or two at time.

He had a good morning today, but this afternoon and tonight have been rough for the little guy. He just cries because of pain and then throws-up because he gets so worked up. I wish I could take all of the pain away for him. It breaks my heart to see his bottom lip curl because he hurts. Motrin seems to help him be more comfortable. Hopefully he can keep the dose I just gave him down.

Moon Time

There’s nothing like a child to remind us of the beauty and wonder that surrounds us everyday. For the past couple of weeks Calahan has been completely mesmerized by the moon. Every night he says “Mama, moon” and goes to the front door and makes the sign for moon. The interesting thing about it is that neither Chris nor I have taught him about the moon yet (sad, but true). He must have picked up the concept of the moon from a new signing time video and recognized it when he looked into the night sky. 

I'm glad Calahan notices the moon and is excited about it. Going outside together each night to enjoy the fresh, quiet air and admire one of God's creations is just the perfect activity to put things in perspective. Moon time is the perfect way to end the day.

Thanksgiving

Abraham Lincoln established the annual celebration of Thanksgiving in 1863 during the Civil War. He said "We have been the recipients of the choicest bounties of heaven; we have been preserved these many years in peace and prosperity; we have grown in numbers, wealth and power as no other nation has ever grown. But we have forgotten God... It has seemed to me fit and proper that [the gifts of God] should be solemnly, reverently, and gratefully acknowledged with one heart and one voice by the whole American people. I do, therefore, invite my fellow citizens . . . to set apart and observe the last Thursday of November next as a day of thanksgiving and praise to our beneficent Father who dwelleth in the heavens."

As we reflect on the abundant blessings our Father has given us we are overwhelmed. We are thankful for our families, friends, food to eat, a comfortable home, a free country, and experiences that develop our characters and stretch our limits. We are truly blessed to share this thing called life with so many loved ones this holiday season.

This Thanksgiving we were lucky enough to host 20 of our favorite Calverts in our home for dinner: Mom & Dad Calvert; Bobby, Lisa & kids; David, Jenny & kids; and Taylor, Ashley & Callie. Calahan was in heaven with so many of his cousins to entertain him. We had a delicious dinner, including a yummy turkey that was transported all the way from Las Vegas, the famous Moody drink, and Uncle Ross's mashed potatoes. Here are a few shots from the big day:

The young adult/teenager table

Croix and Oliva hanging at the kids table

David and Jenny (aren't they cute?!)

Mom and Dad with Crewe (as usual, Dad's getting ready to do the dishes!)

Crewe and aunt Lisa

Are you serious? We can make a fire in this?!

Calyx and Kennedy checking out the desert

Group nap time -- Good meals are SO exhausting!

A Game of Scum -- the perfect end to the day

Medical Update

Over the past several months Chris and I have spent countless hours doing research and meeting with medical experts about Crewe’s condition. Despite our efforts, we are not any closer to finding a long-term solution. Here’s what we know: 

• Crewe’s case of cystic hygroma is considered severe
• Most of his cysts are classified as microcystic
• Microcystic cysts do not respond well to any kind of known treatment, including OK-432
• Cysts may increase in size and number anytime the body goes through a growth spurt or hormone change (puberty will likely be trouble)
• Surgery may “de-bulk” his face for a period of time, but the cysts will grow back
• There is a significant risk of damaging facial nerves with surgery
• Sclerotherapy is somewhat effective at damaging the abnormal tissue, and therefore, is somewhat effective at preventing the growth of new cysts
• The secondary scaring that sclerotherapy causes could potentially make surgery more difficult later in life
• One of the sclerosing agents used for microcystic cysts can cause tooth damage; the other can cause nerve damage if it comes in contact with a nerve 

In the spirit of doing the best we can with the information we have, we have decided not to pursue surgery in the near future, but to aggressively start sclerotherapy treatments again. His next treatment is scheduled for December 1 at Phoenix Children’s Hospital. 

Our primary goal is to relieve pressure around the airway so that Crewe can begin to make sounds (his laser treatment last month failed to help him make sounds) and ultimately get rid of his trach (we are likely many months, if not years away from that). The emphasis is on setting him up for successful speech later in life. 

We are not discouraged. We feel the Lord’s hand in our quest to understand Crewe’s situation and make decisions about his care. For reasons that we don’t fully understand at this time, we know that this experience is important for Crewe and our family. We give thanks everyday that we have Crewe in our family. 

Mr. Jealous

The honeymoon is officially over between Calahan and Crewe. Calahan has decided that Crewe takes too much of his parents’ attention and he’s taking action. The funny thing about it is that he is not at all angry at Crewe, he’s mostly mad at me! Cal has determined that the best way to get more attention is to act like Crewe. Among other things, that means Calahan wants to be carried all of the time (all 26 pounds of him), drink a bottle (not any bottle, only a bottle filled with breastmilk), and eat his meals only while sitting in my lap.

I have to admit that it’s pretty amusing at times to see Calahan “acting” like Crewe. It makes me laugh to see Cal try to wiggle his way out of Crewe’s bumbo after wedging his way into it… or to watch him pull on a pair of Crewe’s shorts as far as his knee and then try to walk… or try to climb into Crewe’s crib while imitating the sound of Crewe’s trach. 

Here are a few "acting moments" that I managed to get on camera.

This is the kid who NEVER took a bottle!

That's Crewe's favorite hanging toy he's playing with.

Look at those legs all wedged in!

Little Crewe-ton Turns 5 Months Old

Crewe hit his 5 month mark earlier this month and continues to grow like a weed. Despite his physical challenges, he seems to be right on track with other babies his age (except for making sounds). Weighing in at 15 lbs, 3 oz, Crewe lights up whatever room he is in with his contagious smile. Here’s what our little Crewe-ton (pronounced “crouton”) is up to currently: 

• Has completely given up the pacifier for his thumb and makes the loudest sucking sounds 
• Rolls from one side to the other and sometime over onto his tummy
• Loves to grab his legs and bring them up to his face, and has he plenty of fingernail marks to prove it
• Is finally putting weight on his legs
• Likes to bring things to his mouth and especially enjoys “chewing” on cloth diapers
• Tries to hold his bottle
• Totally enjoys the bumbo
• Can fall asleep almost anywhere – on his playmat, changing table, in the bath – but his sleeping through the night thing has been limited to a one-time event so far (argh!)
• Loves to watch TV (so not allowed at this age!) and will move himself into any position necessary to catch a glance
• Is developing a great sense of humor. He loves to laugh and even though we can’t hear him laugh, it’s so fun to watch him smile while his chest moves up and down.
• Watches Calahan intently, but seems unaffected by his drama, which can be extensive

Nite-Nite, Crewe

Calahan is usually very good about going to bed at night. We have a routine that includes going to say "nite-nite" to Chris and Crewe. Tonight we did our usual routine except for going to find Chris. Chris was just outside of Calahan's room so he just said "nite-nite" there. As I stepped back into Cal's room with him, he started to protest (very unlike him at night) and insisted that I open the door. After I opened the door, he said "baby" and pointed outside. Then it dawned on me... I hadn't taken him to say good night to Crewe, and he knew it! So, I carried him to where Crewe was playing and Cal blew Crewe a kiss and said "nite, nite." Only then could he go to sleep, and he went down without any trouble at all. Cal loves his brother!

Why I'm Posting at 5:00 am

So I just had one of those moments that every mom can relate to. I woke up in a panic and rushed to my baby's crib to make sure he was still breathing. You see, it's almost 5:00 am and he was due to eat over 2 hours ago. After feeling his chest rise and fall like it should, I came to my senses and happily realized that our baby Crewe has slept through the night! Can you see me dancing for joy at my computer? He went down last night at 8:20 and is still sleeping! Will we be this lucky again tonight? I hope so!

Halloween Fun

Halloween in Arizona is ideal. While we don't have the beautiful fall colors of Colorado (we miss those this time of year), it's nice to go to the pumpkin patch in your shorts, carve pumpkins outside in the 80 degree weather, and trick-or-treat without even thinking of wearing a jacket.

The boys are still a little young to get into the holidays, but we had fun starting some family traditions with them anyway. Halloween night was a disaster for Calahan. He refused to take a nap that afternoon and was a major GRUMP that night. He wouldn't humor us for even a moment by putting on his costume.  Here are a few photos:

Going to pick out a pumpkin.

Helping dad carve the pumpkin (with the dewalt drill!)

Making pumpkin chocolate chip cookies with mom

Cal was supposed to be a lion and this is the only photo

 we have of him NOT crying. Of course, he wouldn't even

 attempt to let us put on his adorable head piece,

 which makes the whole costume! If I could read Crewe's

 mind in this photo, I think he's saying something

 like "come on dude, it's just halloween!"

Crewe was a star, our happy little monkey

Crewe's Blessing Day

Sunday, September 28th was a beautiful day for our family. We were joined in our home by members of our extended families and our bishop for Crewe's baby blessing. 

During this special occasion we were reminded again of what a special gift Crewe is to our family. We all felt an added glimpse into his strong, loving, and wise spirit. The blessing Crewe received told of how his condition is a blessing to him, that he has a specific purpose in life, and that he has many talents to develop. Crewe was also promised that despite his condition, he will be able to realize every righteous desire he has in his life.

The longer I am a mom, the more I realize how essential and important the family unit is to God's plan for the happiness of his children. I thank Him for blessing me with a wonderful husband, two incredible children, and supportive extended family and in-laws.

Crewe's Second Visit to the ER

If Phoenix Children's Hospital had a frequent punch card for patients, Crewe would definitely be earning "free" procedures!

Crewe ended up at the ER at Phoenix Children's on Tuesday after a very rough night. Crewe required constant suctioning on Monday night and by the morning he was exhibiting many of the signs of respiratory distress. He also was feverish, foaming at the mouth, and bleeding from his stoma.

Once we arrived, the respiratory team immediately went to work, cleaning him out really well and giving him some oxygen. This seemed to stabilize him so that they could take some cultures and do a chest x-ray. After several hours, the diagnosis came back... Crewe has a cold! (a COLD? really? are you kidding me?) Apparently Crewe's symptoms were textbook for a trach baby with a cold. And so we learn. I'm glad it was just a cold... I don't want to imagine what something more serious must be like.

The attending doctor wanted to admit Crewe and keep him overnight, but after convincing her that we could monitor Crewe's O2 level at home and give oxygen if needed, she let him come home. Since I'm convinced Crewe got the cold last week while getting his MRI at PCH, I didn't want to chance him getting something else by extending his stay.

Crewe is making progress, but still has some nasty bouts of coughing and restlessness. 

Updates Coming Soon

Life has been pretty hectic over the past few weeks and blogging has taken the back seat to other things like sleep. Many have called and emailed to see if everything is okay (thank you). Since my free time seems to be while pumping at 3:00 am, I haven't been very good at returning phone calls. So, until I'm able to post some updates, please know that despite several hours at the ER with Crewe earlier in the week, we are hanging in there.

My mom comes to visit this weekend so hopefully I'll be able to catch up on some blog posts... and my sleep. What would we do with out moms? I'm so grateful for mine.

Memory Lane Tag

Melissa tagged me last week, and boy do I feel old after completing this! 

20 years ago I...
1. Entered the 9th grade at Ben Hill Jr. High in Tampa, big bangs, braces and all
2. Spent hours every day talking on the phone with my best friend Tracie Shelton (that was okay because we subscribed to a new technology called "call waiting")
3. Could be found babysitting on most weekend nights ($3 dollars/hour was GREAT pay for babysitting back then)

10 years ago I...
1. Graduated with my BS in Business from Brigham Young University
2. Moved to Denver and started my first "real job" at MediaOne Group
3. Met my husband, but wouldn't know it for a few more years

5 years ago I...
1. Married my best friend
2. Moved to Phoenix
3. Started a hobby of remodeling/decorating

3 years ago I...
1. Finished up an exciting three month long work assignment in London
2. Traveled all over the country for work, flying over 100,000 miles in the year
3. Wondered if I would ever get the privilege of being a mom

1 year ago I...
1. Traveled with Chris and our newborn son, Calahan, to Denver for our first family trip
2. Left my job at Time Warner Cable to be a stay-at-home mom
3. Found out Chris and I were expecting baby #2

This year so far...
1. We traveled to Hawaii for some R&R before baby #2

2. We welcomed our second son, Crewe, into our family
3. Calahan started walking and talking

Yesterday...
1. Calahan gave himself a swirlee while I was changing Crewe's diaper (I'm still laughing. Sorry, no pictures!)
2. Chris went to Costco so I didn't have to
3. I listened into a telephone townhall hosted by our US Congressman about the economic crisis

Today...
1. I took Calahan and Crewe to the library for storytime
2. Calahan's halloween costume arrived -- It's SO cute!
3. Crewe's developmental nurse came for her monthly visit and she said that he's doing great and put on 3 pounds since she was here just four weeks ago!

Tomorrow...
1. Calahan and I will go to kindermusik -- it's a "date" that I look forward to every week
2. My mom and Nana arrive for the weekend
3. Chris and I will be watching the season premier of "The Office"

Next year...
1. Chris will turn 40

2. We plan to make it back to Hawaii
3. We hope Crewe will get his trach out

Now, I tag Kate, Anne Marie, and Wendie

Chicken Philly Sandwiches

The cafeteria at Phoenix Children’s Hospital and I got to know each other well while Crewe was in the NICU. One of my favorite things they served there was a Chicken Philly Sandwich. I attempted to recreate it at home and it passed the test to make it into our meal rotation so I thought I’d share the recipe.

Ingredients

2 teaspoons  olive oil

3/4 pound skinless, boneless chicken breast, cut into thin strips

salt

freshly ground black pepper

1 cup red bell pepper strips

1 cup yellow or green bell pepper strips

1 cup vertically sliced onion

1 1/2 teaspoons  white wine vinegar

2 garlic cloves, minced

1/2 teaspoon Red Hot

4 sandwich rolls

4  (1-ounce) slices swiss cheese

Preparation

Heat oil in a medium nonstick skillet over medium-high heat. Add chicken to pan; sprinkle with salt and black pepper. Sauté 5 minutes or until chicken is done. Remove chicken from pan. Add red bell peppers, onion, vinegar and garlic to pan and sauté 6 minutes or until tender. Stir in chicken and pepper sauce and remove from heat.

Slice each roll in half horizontally, cutting to, but not through, other side. Place 1 cheese slice and 1 cup chicken mixture on bottom half of each roll, and gently press roll halves together.  Place sandwiches in the oven to heat for a few minutes or steam in a warm skillet. 

My Friend Amazon

Having two kids under two has forced me to be creative with some of my shopping lately. It doesn’t take too many trips to the store with Crewe and all of his equipment to realize that there’s not much space left in the cart for purchased items -- especially large items. And, all of you with kids know that diapers take up a lot of space.  So… I looked into purchasing diapers online (between Cal and Crewe, we go through 450-500 diapers every month).

What I found surprised me – I can purchase diapers for less than I pay at a warehouse store, not pay any sales tax (8% here in AZ), AND get them delivered for FREE! Amazon.com is the ticket.  I ordered diapers on Monday and they arrived at my front door today for about $15 less than I would have paid locally… and I didn’t have to haul them in and out of my car trunk in 100+ degree weather!

16 Months and Growing

Calahan is growing like a weed – both physically and mentally. He is getting taller, his hair is beginning to fill in, and he now has two molars. He also seems to be learning something new everyday and regularly entertains us with his new skills and attempts at new skills.

Calahan is a total organizer. In the bathtub today, he separated his rubber ducks from the rest of his tub toys. He also likes to be clean. He hates to have anything between his toes, and although he loves to go outside, he can’t stand to be outside barefoot.

He is also a multitasker. He cracked me up the other day when he climbed onto his rocking dog with his sippy cup in one hand and his hairbrush in the other hand and then proceeded to rock while drinking his juice and brushing his hair! He loves his sippy cups and can often be found running while drinking – I call it drunk driving!

Calahan loves books. His current favorites are ones with animals, different textures that he can feel, and flaps he can lift. He also loves any book that plays music or can be sung aloud. He can find almost any book by name.

One of his major accomplishments of the past few weeks is going to sleep entirely on his own (yipee!). We don’t have to rock him or sing multiple songs anymore to get him to go down for a nap! He will often tell us “night-night” and bring us his blanket to let us know he is tired. With a simple kiss and a “sleep good” he climbs into his crib and talks himself to sleep!

His vocabulary is growing.  He regularly says about 10 words: dada (his favorite word), mama, night-night, nana, bye-bye, baby, eat, amen, Jesus, cheese, nose, and no-no-no (with the accompanying pointer finger).  When he is not talking, he is signing. His favorite signs are more, all done, please, thank you, cracker, milk, drink, car, dog, ball, brush teeth, and wash hands.

3 Months Already

We can pause live tv and satellite radio, but where’s the button to pause life?  I’d love to freeze my boys in time because time is simply going by too quickly. Crewe has already grown out of his 0-3 months clothes and is on the verge of going to size 3 diapers.

Crewe’s personality is starting to come alive.  He’s such a happy baby, smiling whenever he makes eye contact. He loves to be talked and sang to and will gaze into my eyes as long as I’m looking at him. He also loves to sleep next to me.  He’s becoming more and more aware of Calahan and has reserved the “worried look” for him instead of his dad.

Tickling his head and patting his bum are sure ways to get him to melt like butter and go to sleep.  He’s a very sound sleeper, surviving the vacuum cleaner and even Calahan’s 5:00 meltdowns. Tummy time is still a favorite and he’s quickly gaining strength. He can roll from side to side, but doesn’t seem interested in rolling over yet.

Crewe doesn’t seem to know that he has any swelling in his face or even a trach. He is very patient whenever I suction his trach or clean around it and change the ties. His next procedure has been moved up to October 2. At that time he will have an MRI and laser surgery to remove some of the abnormal tissue around his voicebox.

A Man With a Plan

From the moment we get Calahan out of his crib in the morning he is directing us to what he wants to do.  His pointer finger must get tired because he uses it so much! 

This week he has insisted that we put on his sandals and a baseball cap as soon as he gets up – it’s quite a look with his PJs! Then, sometime in the morning, he fishes a swimsuit out of his drawer, finds the sunscreen and a swim diaper and brings them to either me or Chris and points to the front door. Lastly, there’s the signature “boy” behavior – he finds the remote to the DVD player and brings it to me and makes the sign for the signing time videos. Gotta love a guy who knows what he wants!

Summer Fun

The classic signs that summer in Arizona is coming to an end are here… the lows at night are beginning to dip into the 70s, the pool temperature is only in the low 80s, and the landscape is starting to get green.  Okay, okay, we really only have two seasons in Phoenix – spring and summer.

While this summer has largely been a blur with everything happening with Crewe, when Chris and I look back on it, we remember the many family members and friends who so selflessly helped our family during this challenging time.

Calahan especially received the royal treatment from a long list of visitors. It was such a blessing that we could leave Calahan with loved ones while we attended to Crewe. Here is a look back at Calahan’s summer in photos. Apologies in advance to Linda and Tara who were here during my meltdown -- I'm sick that I didn't get any photos of you... maybe you have some to share?!

More

Whoever thought of teaching babies to use sign language is brilliant! We don’t go too crazy with signing at our house, but we love the basics — milk, more, please, thank you, baby, etc.  There is something great about watching little Calahan use both hands instead of just one to say please because he really, really wants something.  It’s also fun to see him be our ears for the baby, making the baby sign each time he hears Crewe's trach. However, my most favorite sign to see him make is “more.” Cal uses it to say more tickles, more silly singing, more laughing, more wrestling, more peekaboo, and of course, more dulce de leche milk.

Round Six

Crewe underwent his sixth session of sclerotherapy yesterday at Phoenix Children's Hospital. The doctors were able to treat 20-25 cysts, the largest number of cysts in one session to date. As with his previous treatments, he's very swollen. Fortunately, he did not have to come home this time with any drains attached to his face. 

Crewe's next procedure is scheduled for October 9. In this surgery Dr. Raines will laser some of the abnormal tissue around Crewe's voicebox in an effort to get air to pass through his vocal cords so that we can hear him cry and make sounds. Until this experience with Crewe, I didn't appreciate what a beautiful sound a baby's cry can be. We are looking forward to hearing his little voice. 

Got Milk?

Let me clarify. Got Shamrock Farms dulce de leche milk? If you have spent anytime at our house, you know that we've tried nearly everything to get Calahan to drink milk (fun cups, fancy straws, strawberry quick, etc). I guess that's what you have to do when you have a mom and both grandmas that hate milk. Despite our best efforts, Calahan has continued to turn down milk... until Auntie Dore came to visit. That's right, we can thank Auntie Dore for introducing him to the ultimate milk disguise-- Shamrock Farms dulce de leche milk. I mean who wouldn't want to drink liquid caramel?!

Cal sucks the stuff down so quickly that we have to remind him to breathe. After watching that a few times and questioning what kind of parent lets her kid drink caramel every day, we've been "diluting" it with whole milk. Still, there seems to be something wrong with the idea of using whole milk to dilute anything!

Crewe Update

After a busy week, Crewe is happy to spend time at home and enjoy simple things like a warm bath.  Crewe saw a total of 14 doctors last week and had another round of injections.

The team of doctors that forms the Vascular Malformations Clinic examined him on Wednesday and seemed optimistic about his future.  Developmentally, he is right on track for his age. They are also beginning to see encouraging results from the sclerotherapy and recommended that we continue with the injections through the next year. Unless his condition grows rapidly again and starts to compromise his airway, the doctors agree that surgery should not be considered at this point.  

Although the doctors can't completely rule out the possibility of another rapid growth phase, they believe Crewe has passed the phase during which this condition typically can grow most aggressively.

While we are pleased with the assessment, we continue to do research and look for experts in this area.  In our search so far, we have been impressed with the results of a sclerosing agent called OK-432. In Japan, it is the treatment of choice for cystic hygroma. Unfortunately, OK-432 it is not approved by the FDA.

Crewe is recovering well from his injections on Thursday. The doctors focused on his right side and were able to get 12-15 cysts.  He is such a trooper and graduated from the recovery room in just 45 minutes. He has the normal bruising and swelling that we have seen after his other treatments.  You can see some of the swelling on his right side in the photo.

Baby Crewe Turns 2 Months Old

It’s hard to believe our little Crewe is two months old today.  Despite spending 30 days of his short life in the hospital, he is showing amazing development and passion for life.  He is also gaining weight at a very healthy pace, putting on 17 ounces in the last two weeks alone to bring him to 10 pounds 3 ounces. 

 Here are some of his highlights: 

• LOVES to be held
• Smiles a lot, which makes his cheeks get even bigger
• Holds his head up unsupported
• Actually enjoys tummy time (unlike his older brother did)
• Eyes are turning really blue and getting bigger
• Very expressive with his face (he can often be seen giving his dad the “worried look”)
• Is super alert and loves to follow faces and noises with his eyes 

So, what’s next? 

Tomorrow Crewe’s case will be presented to 12-15 doctors that form the Vascular Malformations Clinic at Phoenix Children’s. The doctors, ranging from pediatric plastic surgeons, dermatologists and orthopedic surgeons to interventional radiologists, will collaborate and recommend a long-term treatment plan. 

The “clinic” was just formed a few months ago and is one of only a handful in the country that focuses on anomalies like Crewe’s. One of the lead doctors in the group comes from the Children’s Hospital in Philadelphia, which is known for its treatment in these rare cases. We feel so grateful that Crewe’s case was accepted by the group. 

Then, on Thursday Crewe will go in for another round of sclerotherapy at Phoenix Children’s Hospital. This round is scheduled as outpatient so we should be able to avoid an overnight stay at the hospital. 

As Chris and I reflect on the past few months, we feel so thankful for friends and family who have gone above and beyond in lending us a hand. Your prayers have been such strength and we know that Crewe’s progress is a direct result of faith. Thank you.

Calahan's First Haircut

Notice the chips in his hands!

Calahan is signing "more" as in "more chips if you want to keep cutting my hair!"

Yipee!  I'm all finished!

Salt and vinegar chips, a fountain drink, and cousin Mindy.  That's the recipe for a good toddler haircut.  If only I had figured that out a couple of months ago!  Calahan's hair had been curling in the back for several weeks and had sprouted a nice ringlet at the top. At first it was endearing, but then it grew old as his hair began to resemble a mullet and a mohawk. I just didn't have the guts to cut it myself. Thanks, Mindy for doing the honors.

And, yes, this really is just his first haircut. It took over a year for his hair to get to a point where we could cut it. We giggle when we remember that there were premies in the NICU that had more hair than Calahan when he came to visit Crewe last month.

Another Bump in the Road

It happened again. Practically overnight Crewe's cysts grew. This time they extended into the top of his chest and began putting more pressure on his esophagus. As a result, he was having a very difficult time swallowing and couldn't keep his food down. He also was laboring more than normal to breathe.

I started to freak out. We made a late night call to the doctor and ended up at the ER at Phoenix Children's last Thursday. Crewe was immediately admitted to the hospital and scheduled for three rounds of emergency injections to help relieve the increases in swelling.

The first round of emergency injections was last Thursday and fortunately it provided immediate relief to his eating problems. He underwent another round the next day and had his last round of emergency injections this past Monday. After each set of injections, the doctors left in two "drains" for 48 hours that literally suck fluid out of the cysts and deposit it into small catheters.

I had a total meltdown on Thursday when the hospital would not admit him back to intensive care. I could not bear the thought of leaving him for any period of time to a nurse with several other patients. Because of the trach, Crewe's cry cannot be heard. I was so worried that he would need something and the nurse would not know because she could not hear him cry.

Feeling completely overwhelmed, I called my good friend Tara in Denver who is a labor and delivery nurse and who just happened to answer her phone while on a break at work. She calmed me down and gave me some great advice like good friends do. And then she did something that I will forever be grateful for... she got on a plane the next day so that she could stay the nights at the hospital with Crewe. Knowing that Tara was there with our little guy gave me the peace of mind I needed to sleep.  Thanks again, Tara!

We were able to bring Crewe home on Monday night with a couple of his drains still attached.  I took him back to the hospital on Wednesday for the drains to be removed and he did great. He is very, very swollen from so many procedures in a such a short period of time, but we are hopeful that we will see an improvement in his overall condition soon.

Home Sweet Home

Crewe is home!  After 25 days in the NICU, he's finally totally ours. It's such a great feeling to have our entire family under one roof. We've been smothering him with lots of love and attention.  Even Calahan is all about the baby (for now). His new favorite sign is the one for baby.

Crewe arrived home last Monday afternoon.  He had a "limo" ride home.  Apparently, Phoenix Children's Hospital requires all newborns with trachs to go home by ambulance. So Crew got to ride in the red limo all the way home.  You may be wondering how the transported him.  I did. They strapped his car seat to the gurney!  

We are adjusting to life with two little ones at home and feel so grateful for so many friends and family who are helping us to make that adjustment.  More to come soon.

Little Drummer Boy

Calahan has become a real daddy's boy since Crewe was born.  He now cries when his dad leaves the house (he just waves bye-bye when I go) and he tries to do everything just like Chris does. That includes playing the drums. Calahan bounces to the beat as Chris plays and gets a real kick out of standing on his tip toes to play the cymbals. The Calaman has more rhythm at one year than I've ever had.  In fact, Calahan can often be found bouncing up and down to the beat of my breast pump!

Life at the NICU

Okay, I admit it.  I'm horrible at downloading photos.  Just ask my mom.  So after 3 1/2 weeks here are some photos from Crewe's stay so far at the hospital.  Get a look now because these photos are soon going to be replaced with ones of him at HOME!  That's right... looks like we are going to be able to bring him home on Monday! (If Chris and I pass all of our tests, that is!).

Doctor Could Not be More Pleased with Injections

The first round of injections appears to show real signs of success. Dr. Schaffer remarked several times over the past few days that she could not be more pleased with how things are going.

Dr. Schaffer had prepared us to see an increase in swelling before seeing any decrease.  She also told us that we would likely not see any results until 3-4 weeks after the procedure.  However, we have all seen a noticeable decrease in swelling on Crewe's right side! 

Crewe seems to have tolerated the alcohol without any problem so we are planning to do the next round of injections in 4-6 weeks. This next round will be on an out-patient basis.

Injections Scheduled for Wednesday

Dr. Raines gave the interventional radiologists the go to begin the first round of injections tomorrow morning.

The objective of the injections is to reduce the swelling by collapsing the fluid-filled cysts and lesions.  The agent that will be used is pure alcohol.  The alcohol essentially "burns" the sides of the cysts and makes them collapse and stick to themselves, thereby creating a seal that will prevent the cysts from filling with more fluid.  

The doctors will inject the largest cysts first and will do as many as they can with the limited amount of alcohol they can use.  The amount of alcohol that can be used is based on Crewe's weight. Since he is a mere 8 pounds, the doctors can use about 3 cc of alcohol.

The doctors will use ultrasound to target the cysts and a small needle to insert catheters into the largest ones to facilitate draining. Crewe will be under general anesthesia for the two hour procedure.  

While the alcohol begins working immediately, the results will not be visible for days or weeks. The plan is to keep Crewe in the NICU for a few days following the injections to make sure there are no adverse reactions.

A Healthy Appetite

After nearly two weeks of receiving his food through a feeding tube, Crewe began taking his food through his mouth a few days ago.  He must be trying to make up for lost time because the nurses often find themselves refilling his bottle. 

Crewe is also a great nurser.  I was worried that the window had closed on his desire and willingness to learn to nurse, but he latches right on every time I'm at the hospital.

The results of his healthy appetite are showing in his weight.  He's now up to 8 pounds and 2 ounces.

Every day that goes by seems to bring improvement for Crewe.  He doesn't seem to notice that the trach tube is there.  We changed the tube yesterday for the first time and he didn't even cry. 

Crewe is Making Good Progress

Crewe appears to be adjusting well to his trach.  Yesterday he graduated from the ventilator and is breathing entirely on his own.  He was fitted with a trach "collar" that helps to keep the air he breathes warm and moist.

Dr. Raines visited him this morning and said that he looks great and moved up his first trach tube change from Tuesday afternoon to Monday afternoon.  If all goes as expected with the trach change, Dr. Raines will give Dr. Towbin, the interventional radiologist, the okay to begin the first round of injections as early as Wednesday.

Surgery Went as Planned

After the 40 minute procedure to give Baby Crewe a tracheostomy, we are all breathing better. The surgery went just as planned. Crewe is now able to breathe more comfortably and without the irritation of a tube in running through his mouth and down his throat.  

Crewe woke up from the anesthesia at about 7:00 pm tonight and gave me and Grammy a big smile. For the first time in several days the tape and tubes on his face are gone and we are able to see his whole smile.  What a gift.

The trach will need to heal for the next 7-8 days before it is changed.  If all goes according to plan, Crewe will begin his first round of injections shortly after the first trach change.

It is not easy for a mom to send her baby into surgery, but it was easier knowing that so many friends and family have been and are praying for our little guy. 

Crewe Scheduled for Surgery Today

Crewe's ENT, Dr. Raines, got back into town today and saw him at the hospital.  After looking at Crewe and reviewing his MRI with several doctors, he suggested that Crewe undergo surgery for a tracheostomy prior to him receiving any injections.  A trach is the safest way to ensure an airway for the little guy as injections can cause swelling and bleeding that can compromise his airway.

It has been a hard 12 hours for us.  We had been hoping that we could avoid a trach for Crewe, but it seems like it is the best thing to do in his situation.  A tracheostomy is a surgically created opening in the neck leading directly to the trachea.  A trach means a lifestyle change for our family.  Chris and I will have to attend classes and "get certified" in caring for the trach.  Among other things, it will require regular suctioning and changing and cleaning the tube.

The trach procedure is scheduled for 10:30 am today and we will post an update as soon as we are able to.

Things are Looking Up for Little Crewe

Yesterday we received some encouraging news from the cranial-facial plastic surgeon.  After consulting with a number of doctors, she believes that there are some cysts and a lesion in his neck that can be treated with injections.  The injections would cause the cysts to collapse and thereby help open up his airway.

The purpose of the injections at this time would be to avoid a trachaestomy, which some doctors thought would be inevitable.  We are all hoping and praying that this will work.  We are waiting for the pediatric ENT to return to the office on Monday.  If the ENT gives his blessing on the proposed injections, the injections can begin as early as Monday.

The injections would buy Crewe some time to grow and develop so that he can be as healthy and strong as possible for the treatments that would ultimately remove all of the fluid and cysts.

A Bump in the Road

During his first five days of life, Crewe was making great progress. He was breathing entirely on his own, learning to eat from a bottle, and gaining weight.  We were feeling very encouraged especially as the hospital called and asked us bring in a car seat to test positioning.

On Wednesday things changed.  Crewe was clearly struggling to breathe and didn't have his normal pink coloring.  Apparently, the cysts in his neck were growing and cutting off his airway. Within just a few hours, Crewe was transported from the McDowell campus of Phoenix Children's Hospital to the Thomas campus and found himself in the operating room with the doctors trying to secure his airway.

Fortunately, the doctors were able to intubate Crew as the alternative was a to perform a tracheastomy.  Crewe and his parents all breathing a little better since the operation. 

The intubation is just a short-term fix for his breathing.  We are talking with the specialists  to establish short-term, mid-term and long-term plans.