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.

A New Baby Boy

Crewe Holmes Calvert was born Thursday, June 5th at 6:32 pm. He weighed in at 7 pounds, 5 ounces and measured 20 inches long.

Crewe is a sweet boy who has already overcome much in his young life. He has a rare birth defect called cystic hygroma. The cystic hygroma causes fluid to build up in hundreds of pockets within his face and neck and can cause a serious obstruction to his breathing.

To manage issues with his airway at birth, he was delivered via risky c-section called an EXIT procedure. Crewe had quite the birthday party... there were 12 doctors and 10+ nurses in the operating room. Fortunately, the procedure went exactly as planned.

Because of Crewe's delicate condition, he is in the Newborn Intensive Care Unit at Phoenix Children's Hospital. It was torture to leave the hospital without our little guy, but we hope to bring him home soon.