We've Graduated and We're Done!

SOOOO SOOO RELIEVED! On May 5th we saw Dr. Proctor at Boston Children's Hospital for a surprise check up since our Orthotist Brian was amazed by Benjamin's progress at his Midterm scan! So two weeks after seeing the orthotist we went in. Dr. Proctor do a quick check and some measurements and told us we were done with helmet therapy!!

Benjamin with Dr. Proctor, Neurosurgeon at Boston Children's Hospital

When talking with Dr. Proctor he did say we could if we wanted go for a second helmet but he didn't feel it would be necessary it would only aid in smoothing out some indentations but regardless those would eventually go away with time as he grows and ages. We were concerned that it may affect development if we ended too soon and he assured us everything is as it should so a new helmet would be strictly cosmetic. This was aligned with what the orthotist had said as well. My husband and I exchanged quick glances and agreed we were done! I was so happy and relieved for my boy. The helmet was off and off for good. We did talk about changes and risks of regression which with metopic is less than 5% especially since we caught it so early. But Benjamin would be constantly monitored until he hit 12 years of age. We would have a field trip up to Boston twice a year for appointments.

Benjamin with Orthotist Brian from Hanger Clinic

So this morning we went to our last ever Orthotist appointment at Hanger Clinic. Orthotist Brian took some measurements and was amazed that just in the three weeks since we last saw him (April 21st where we got the scan, May 5th was neurosurgeon, and today, May 12th) Benjamin's head continued to adjust more! It was even better news since from the time we saw him to Dr. Proctor I kept his helmet on religiously! We said good bye to Brian and he gave Benjamin a adorable little diploma for his baby book.

My happy little helmet graduate!

So he's not in the clearing yet but he's far from the swamp lands! Now we monitor, check development, meeting milestones, and keep an major look out of internal cranio pressure or vision which is common with Metopic Cranisynostosis babies! But we are so close to normal is beautiful!!

Call from the Neurosurgeon!!!!!

YES!! Received a call today (that of course I missed) from the Neurosurgeon's office. Looking to take some measurements and perhaps graduate from helmet therapy. I called back but it was already too late the secretary was home for the day. I will call tomorrow!

Fingers crossed!

Mid-Treatment Scan!! AWESOME News!

Okay, so first things first, I MUST apologize. I've received a few emails from people who found my blog either via Facebook or just a good ole fashion google search. I have not done a good job of updating it after every appointment and while we have consistently received good news, there really just wasn't much to report... until today!

I am so so so excited that today at the "Mid-Treatment Scan," Benjamin's head has adjusted a grand total of 9mm in all direction! His helmet is getting tighter but still very effective. So what does this all mean?! Well when I got the copy of the scan and side by side, I said outloud "boy it almost looks normal" and our orthotist said "NO, it IS normal!" SERIOUSLY the happiest words ever spoken to a crania parent!

Essentially (and it is a combined decision between the Neurosurgeon, Dr. Proctor, the Orthotist, Brian Heckathorn, and me and my husband) he will not need a second helmet! Once he outgrows this helmet we are done!!!

Just see for yourself the changes:

Its pretty incredible. His very first scan was on January 28th, just three days after the endoscopic surgery and this mid-treatment scan was today, April 21st (that's less than 3 months of helmet therapy).

So what happens next... well we're not to sure! We have an appointment with the neurosurgeon on July 1st but the orthotist told us not to be surprised if his office calls us after he receives the email for an earlier appointment. We go back to double check size and fit on May 12th with the orthotist, just a week prior to our trip to Florida.

But now, we wait to hear from Dr. Proctor with fingers crossed he agrees.

So to put things in perspective here are some photos I took along the way... keep in mind I took very little at birth because I didn't think anything was wrong...

Sleeping with his eyes wide open?!

So just a random post. I have been taking half days at work this week because I'm worried about going back full time and not being around for Benjamin as he adjusts to his helmet schedule. Today however when I finally had a chance to just sit (both he and his big brother were napping), I observed Benjamin sleeping with his eyes wide open. This wasn't just for a few seconds or a couple of minutes either. It lasted about ten whole minutes. I quickly took a video just in case it's something. In addition to this he also does a weird lip quiver when he's awake (and it's not related to crying or being upset) and his eyes when awake do a very rapid back and forth flutter. Unfortunately, I am unable to film both of those because it's hard to see on a cell phone camera. So I posted it on the Facebook support group I'm a member of to see is it Benjamin or Cranio/Surgery related and all but one said their babies don't do this. So tomorrow after the orthotist I think I will call the Neurosurgeon just to be on the safe side... I hope I'm just being a paranoid mom!!

Sound asleep with his eyes wide open!

Thirteen Days Post-Op and Six Days of Helmet Therapy

So we are just thirteen days past his surgery and six days into helmet therapy! Benjamin amazes me more and more each day. The helmet is very clearly awkward and heavy. He had very strong neck control prior and was rolling over but now naturally with an extra two pounds he finds it difficult. I also noticed when it's off he looks around nonstop. It actually makes it very difficult to nurse him as he is just busy moving his head in every direction. He also had a schedule but yesterday and today it kind of went out the window when he fell asleep in it. I just let him gone until he fussed about twelve hours total! He is to work up to 23 hours per day with only one hour off. I am really looking forward to meeting with Brian his Orthotist to see what he thinks of the development already and an anticipated timeframe. We were supposed to have his appointment tomorrow but with the big blizzard coming it's been moved to Wednesday. Ceste le vie!

The difference in just a short time just astounds me! (photos taken yesterday) The photos on the left side are pre-op and the photos on the right are after surgery and helmet therapy.

"Painting the roses red we're painting the roses red not white or green or ..." - Painting the Helmet (Part I)

So I've mentioned a few times I'm a member of a few Cranio Support groups and those with helmets are often colored or decorated. I was very excited as some of them are absolutely amazing. So when I went to meet the orthotist I immediately asked about what kind of helmet I can get for Benjamin, HAHAHA. These helmets are painted and stickers! Anyone who knows me can attest I am most definitely a left brain thinker, no creative side to me at all! Sure I have lots of ideas but when pen comes to paper I am at a loss.

So I started doing some research (big surprise right?!) and found it doesn't seem too hard. THEN I came across this women: Lazardo Art and the art of baby helmet, can I just say OMG. I am obsessed with the aviator helmets. So I contacted for more information and it's just slightly more than I wanted to spend and I'm very worried about the time frame even though I'm assured by many that her turn around is 48 hours. So I found a website, Bling Your Band, that makes stickers for baby helmets. Which also has pretty detailed instructions on how to paint and decorate yourself. So between Bling Your Band's directions and this women's awesome youtube video, I began my adventure into the world of art.

So here is what I started with:

Ingredients

• Craniosynostosis Helmet 
• *Unlike the DOC Bands, our helmet is a clear hard plastic
• 2 - 2 oz. container of Acryllic Paint (Sailaway Blue)
• 1 - 8 oz. container of Mod Podge
• 2 sponge brushes
• Papertowels
• Water
• Hair dryer
• Nailpolish Remover
• Painters Tape

To start, I first used the painters tape to outline the helmet. This was pretty difficult since the helmet is curved and a hard plastic. If I am going to do this again, I also recommend taping the entire inside to prevent paint from dripping into the holes and down the helmet.

Many recommendations say to sand or prime the helmet first. I did neither since the helmet was clear and the color was going to be close enough.

I painted the entire helmet and gave it three coats. This really only took one, two ounce bottle but because I was heavy handed I ended up pouring two bottles instead. You definitely don't need more than this.

I allowed the helmet to dry over night. In the morning it was still tacky and wet in some spots so I used a hair dryer on cold and blew it dry. If I knew how quickly this would have worked I certainly would have done this last night to finish up.

Once dry, I applied three coats of mod podge. I had never used this stuff before but was thankful of the youtube video or I would have been horribly shocked it came out white!
Again I blew dry this until dry.

Then because I failed to cover the inside I took some rubbing alcohol and gave a quick wipe on the padding inside and then using the nail polish remover (acetone) wiped up all the paint that had dripped down the helmet. It took off nearly almost all of it, which was excellent.

Then it had to immediately go on Benjamin's head. He wore it for three hours on today and one hour off. When I took it off, he had gotten pretty sweaty in it and some of the remaining paint did get in his hair. With a damp paper towel it came right off, so no worries.

Hat of Tears - AKA Baby Helmet

Well, yesterday was an eventful day. We went to our appointment to meet with the orthotist for Benjamin to receive his newest accessory and our training on how to put it on and off (there is more to it than you'd think).

A very angry Benjamin with his new helmet!

A lot of the time at Hanger Clinic was the three of us (myself, husband, and Benjamin) just waiting around. They received the helmet and would come in every ten minutes or so to take a few measurements here and there. Finally they brought the heavy plastic thing out. We learned a how to place it on Benjamin's head and how to take it off, signs to look for if we did it incorrectly. We learned how to clean it, where he can and can't wear it and his first two week schedule. It all happened very quick.

First pacifier which seemed to soothe him on our way home...

The helmet is clear plastic with holes drilled in the top for air circulation and to minimize heat rash (and getting smelly). All the areas of pressure have heavy padding on it (sides near his eyes and forehead on the metopic sutra). The helmet itself weights 1.5 pounds all together. That's a ton considering Benjamin is only 13 pounds. We were given the okay to paint and sticker it as much as we want and the orthotist Brian was very familiar with "Bling Your Band", the company we ordered the stickers from.

Once a sleep he's wonderful in it, but getting there is the challenge.

For the first two weeks, Benjamin is on a schedule. The purpose of this on and off is two fold. One, to teach US how to put it on and off properly and to watch for irritation points and two for Benjamin to get used to having it on. The orthotist said he will be extremely upset this week as he adjusts but like anything else that's new and scary he'll navigate through it better than we can as adults. Many babies find this as their own soothers versus a blanket, stuffed animal, or pacifier.

The red is just because of babies naturally sensitive skin. After day one this has stopped happening already.
You can see though where the pressure is to help mold his skull and brain.

For day one (yesterday), Benjamin had to wear it for one hour on and three hours off. Today he is wearing it for two hours on and two hours off. Tomorrow will be three hours on and one hour off. The goal is to work up to 23 hours total every day. One hour break to clean the helmet with baby soap and unscented baby powder and to allow Benjamin to do tummy time. For this week though, if Benjamin is asleep during his time in the helmet, we're not to wake him to put it on and vice versa if he's asleep we're not to wake him to take it off. The goal is to keep him happy while making him adapt.

All in all, it's been painful to listen to him cry but he is adjusting rapidly. I am relieved that we are only looking at 3 to 4 months though! He is already so much stronger than I am!

Bandages and Scars

So just a quick post as I realized I forgot to publish my post about removing his bandages.

Bandages Off!!

Monday night was one week from his surgery and per the discharge instructions I removed Benjamin's bandages. Let me just say this, those suckers are stuck on so tight. The glue is impossible to get off. I ended up using vaseline but that was after trying rubbing alcohol, baby shampoo, and olive oil (per online group recommendations). It's finally off and not sticky! 

Close up of the stitches.

The stitches don't look too too bad. It's about three inches long and runs along his forehead. They are dissolvable and go away in three to four weeks after surgery. It doesn't seem to phase him at all even as it heals. The stitches are right at the hair line (in fact the Neurosurgeon gave him his first haircut and you can see with the bandages off exactly where). 

Monday, I gave him a bath too just can't get his head wet yet so not too bad. And while the helmet annoys him it doesn't seem to have any affect on his stitches at all and he's not trying to touch his face or showing any other signs of irritation. Certainly by his teen years it will be hardly noticeable. Especially in the 90th percentile for height I'm sure no one will see it!

Insurance - on the edge of my seat!

Well, I've had a bit of a scare. In my support group several (and I mean more than fifteen) members have talked about how their child's surgeries were done and paid for by their insurance but then the insurance would not cover the cost of the child's helmet therapy!

 So on Saturday I received a letter in the mail from Blue Cross/Blue Shield and of course without reading it my heart sank. I dreaded what it would say. Fortunately, it explained that at the request of our neurosureon, Dr. Proctor they put in a request to make sure the entire surgery would be covered prior to the operation. This was something I foolishly never even considered checking but per the letter from BC/BS, I had nothing to worry about.

When I went to Hanger Clinic to meet Benjamin's new orthotist I stressed that I wanted to be sure our insurance would pay for treatment and the helmet. I understood that from the insurance perspective they felt this part was purely cosmetic. I was assured by both the neurosurgeon and orthotist that this is very much not and extremely needed. In the event he was denied by the insurance they would write letters on Benjamin's behalf to make sure it would be covered. A few hours after we got home on Thursday from Hanger Clinic, Brian called to say that he confirmed with BC/BS that we would be covered for the treatment and helmet. This was a relief... though I am still slightly nervous. Many in the group said that while theirs was covered it was only the first helmet and not the subsequent helmets. So now I wait but I'm prepared to fight. My husband and I decided that regardless of the expense we would do what we needed to give Benjamin the best in life and keep him healthy. So now we wait...

Helmet Fitting and the first few nights home...

Well we're surviving and dare I say it, it's not nearly as bad as I anticipated. When I said Benjamin was a warrior that was nothing at the time!!

Our first night home, while I was scared, was the easiest. He took his medication every four hours on the clock and was still medicated from the hospital. He slept through the night (his usual self). Wednesday was a little harder, I tried to wean him off the medication so he did have moments of misery before I gave in or he fell asleep. It really was easy. He wanted to sleep more anyways so I lucked out. The biggest issue is just monitoring his head for any problems and keeping him safe from his big brother, lol. Already, the first full day home he was smiling, cooing, and giggling!! He had a few rare smiles before but this is full fledged happy baby! He also rolled over before but now he is attempting to move in any real direction. It was amazing. People in my support group had told us about the changes after surgery but to really see them and to see it happen nearly right away was incredible. My fussy, pukey, sad baby was pretty much gone.

The Metopic sutra is not even visible in the adult skull!
The whole in the skull is what Benjamin was missing and what the surgeon cut open.

Thursday, we went to Hanger Clinic to meet Brian, Benjamin's orthotist. He was wonderful, he explained what he did, how he will help Benjamin, and the purpose of a helmet. Again he emphasized this is not for cosmetic purposes it will not smooth his head but it will allow the sutra to stay open a little longer and the brain to expand and grow properly. He showed me two different skulls, one of a baby under one years of age and one of an adult skull. The metopic sutra is the only sutra that completely closes and is not visible in the adult skull. It also is the first one to close (though none of them should close before 1 year of age).  He also told me that the skull will continue to close even though the neurosurgeon took out 1 cm of bone. Brian explained the infant skull is like play dough in the jar. So long as it stays in it will be soft and playable which is what the helmet can help with. As it ages and comes out of the jar it gets harder and harder until you can't do anything with it.

High Tech Equipment at Hanger Clinic

So the fitting for the helmet began after my rapid fire Q & A. Benjamin first had to wear a stocking on his head and then a black cape. I held him on my lap as far away from me as I could while I too was slightly under the cape. This reminded me of being on a green screen at a movie set. He then uses a scanner to send images of Benjamin's head to the computer. That was pretty much it. It was really impressive to see the computer immediately generate a 3D image of Benjamin's skull and how painfully obvious that even after surgery it wasn't correct. This was my first view of what his skull looked like since we never did have a X-Ray, MRI, or CT Scan! After that, we sat and waited a bit (I nursed) to make sure the helmet company accepted it and we were done! It was really that easy.

Benjamin will wear the helmet for not less than one month but no more than nine months. His Orthotist anticipated it would be three to four months unless after the first month he shows significant improvement. If things didn't move as they should it would be longer but could not go longer than his first birthday as the brain would stop growing then and the skull would completely fuse. He would probably only have two helmets that he'd wear day and night. The helmet will be clear but I'm allowed to decorate or paint it anyway I want. To help prepare for the helmet, the orthotist highly recommend from Thursday to Tuesday keep putting hats on Benjamin so he gets used to having something on his head. I didn't get any pictures because I went to the appointment by myself but his next scan I will have someone with me!

Benjamin with his pirate hat from the Cranio Angel Network (CAN)

When I got home and checked the mail, Benjamin received his cranio hat from the Cranio Angel Network. It couldn't have been better timing! I immediately put it on him and he's now wearing it 24/7. The CAN makes pirate hats for boys and headbands for girls who have craniosynostosis. With the pirate hat for Benjamin she included a personalized note of support and talks about how her daughter was diagnosed in 2009. To keep busy (much like me and my blog) she began using her talents and sewed. Eventually to raise awareness she started CAN to give hats and headbands to children all over the world. Even the CAN logo helps to raise awareness, the best way to look at a child’s head suspected of having Craniosynostosis is to get a Bird’s Eye View. Each type of Craniosynostosis has a distinct head-shape. In their logo, they have depicted three of the most common types of Cranio: Coronal, Sagittal and Metopic.

c - Coronal (right)

a - Sagittal

n - Metopic Other less common types of Cranio not depicted in our logo are: Bi-coronal, Lambdoid, Frontosphenoidal, and multiple closed sutures.

Other than that appointment, the rest of the week has been fortunately uneventful. Benjamin has amazed me more and more each day. Aside from some tylenol at bed time when he seems the most cranky he hasn't really needed any! The biggest thing is watching his wound, stitches, and behavior from now until the helmet arrives on Tuesday.  No baths yet, which drives me crazy as I feel he needs one but one week will arrive soon enough.

Getting ready for the night!

It certainly scares me how extremely quick this has been going. In less than one month we met with the pediatrician, got a diagnosis, met with the neurosurgeon, arranged for surgery, had surgery, met with the orthotist, and now awaiting the helmet. My support group I belong to seems to have much more time to digest this than I.... certainly scares me but there is no turning back now! 

We survived!

So the first night was very uneventful. Benjamin would wake at 4 hours on the dot for his tylenol. He nursed great and fell asleep in his bassinet. I was so surprised at how strong he is and how happy/smiley he's been acting. 

This morning, he's had mini moments of fussiness after officially waking at 9 AM but for the most part he is a otherwise happy baby. It amazes me because he really was so truly miserable the first three months of his life and one very eventful day later he's smiling like crazy!

Tomorrow we go for to meet his Orthotist for head imaging and helmet molding.

An orthotist is the primary medical clinician responsible for the prescription, manufacture and management of orthoses. An orthosis may be used to: Control, guide, limit and/or immobilize an extremity, joint or body segment for a particular reason. To restrict movement in a given direction. 

Then the TRUE mommy test begins.

Orthotics

We're On the Other Side!! - Part II

So Mandell 3 is literally connected to the recovery area and operating rooms. So connected you have to cut through them each time you want to go to the cafeteria or lobby/elevators. Easy to get in and out but only if you know with purpose where you're going. 

Benjamin swollen from surgery hooked up to an IV - Boston Children's Hospital

He stayed in the same bed the entire time but was hooked up to the monitors there. Blood pressure, oxygen, pules, IV (he received on bag of IV fluids the entire stay). We met our assigned nurse, Kristen, she was wonderful and very helpful. It was nice knowing she would be assigned with us both Monday and Tuesday. At night we had Nurse Charlene who was very wonderful as well. 

The moment we got to the room, I was able to nurse him. It seriously was the best thing I could have done. It helped me get over the fear I had of touching him and hurting him, he was able to eat which is crucial as we had to save every dirty diaper because they were weighing the fluids. Also nursing is a natural pain relief. The nurses were very helpful and helped position him and move all his wires. I must say the wires were a pain in the butt as they were constantly getting knocked off of him and each time it happened the nurses came rushing in. 

The day went by pretty quickly once we were in our "suite". My father brought big brother Lucas up to visit and to pick up my mother who had stayed with us the whole time. They gave me the opportunity to grab some food and some snacks to get through the night. 

Getting to finally hold Benjamin for the first time since surgery - Boston Children's Hospital

As parents we were required to wear badges at first it was just a name tag but then we had to get "official" ID's since we would be coming and going. Most importantly for my husband as that would allow the elevators to work after 8 PM when visiting hours ended. 

Aside from the nurses our night was undisturbed and he was minimally interrupted. It was great as he slept most of the time. As night time shift changed, we were aware that only one parent was allowed to stay over night. I had read in the Cranio Facebook group I belong to that depending on the nurse depends on whether both parents could stay over. Just to be sure my mother had booked a room at a nearby hotel for my husband but didn't prepay. As it got later we started to panic and thought about him staying closer or sleeping in the arm chair and I'd sleep on the pull out chair a nurse suggested the cots in a community area for parents to sleep on and sent us to family services to find out. 

Family Services proved to be a big help. The cots were all taken (regardless they are reserved for parents with children in the intensive care units). I asked about the Ronald McDonald house but was told those are exclusively for children who have cancer and their families. She did say she would contact two of BCH houses similar to the Ronald McDonald house and see if they have room as they'd rather the rooms be full than empty but also prefer the rooms to be used by more serious issues or long term stays. She gave me a list of hotels that offer discounts in the area as well. I walked back to Benjamin's room with plans that he'd either sleep in the terrible chair or use the hotel we had reserved. The moment I got back I had a missed call from family services! They had availability in the Yawkey House for Colin. $30 per night and she reserved two nights just in case but he had to go immediately down to complete the paperwork. We were so relieved. It was extremely close by about 85% cheaper than what we were to pay and had a shuttle. My husband could also stay as long as he wanted with us before heading back. The Yawkey House was six blocks away from BCH. 

Pull out chair - Horribly uncomfortable but served the purpose!

Messy bed - I put a sleeping bag down first then the fitted sheet to make it a little softer. It also helped when Benjamin vomited several times and saved the sleeping bag. 

My husband stayed with us until about 10:30 that night and I just all but passed out. I was so exhausted I'm pretty sure I could have slept on the floor! Benjamin did excellent. The nurse came in once at 12 for night meds and vitals and he slept right through it! He then woke up at 4 AM to nurse, vitals, and tylenol. Almost immediately after, Benjamin projectile vomited three times. I called the nurses because I had never seen him throw up before, as this was a lot of volume and definitely more than just a little spit up. The nurse had thought it is all just from stress of surgery, and probably just eating too much when comfort nursing. Too many hours had passed for it to be an effect from anesthesia.

Bandage hat removed, getting ready to be cleared to go home - Boston Children's Hospital

We were able to sleep for about another hour when we were woken by a Neurosurgeon "fellow" who works with Dr. Proctor. She was the same one who came to check on Benjamin when me and the day nurse were concerned that Benjamin's eyes were rapidly twitching. She came to see if he had the eye movements again and I reported that my husband and I saw it once more and attempted to film it but couldn't zoom in enough to actually see the fluttering. She said it was probably just a symptom of him coming off the morphine and anesthesia and no need to worry. After that she left and about an hour later another neurosurgeon fellow came in. Quietly removed his "bandage hat" and took a look at his head and any remaining swelling. My little man is a warrior and almost all the swelling had been peed out! He also had minimal bruising (on the side of his nose in the corner of his left eye, on the top of his skull, and on both hands and top of his feet). He told me Dr. Proctor would be in to see us shortly.

Night after surgery - Boston Children's Hospital

When Dr. Proctor came in, he did a quick scan. Reiterated the cleaning instructions and about the helmet and reminded me to call Hanger (the helmet guy, Brian). After that he said he could definitely go home today! We have a follow up with him in early March after helmet number one! That was around 6 AM, right before I am guessing his long list of surgeries!

After that it was just a matter of waiting around to be released. The nurse told us to anticipate some time between 9 and 11 AM. They were amazed at Benjamin (and little babies in general) and how strong they are. I don't think anyone was more amazed than me as his mother!! 

Sitting and waiting to go home was the worse. I was starving and my husband was checking out of the Yawkey Inn (he had to wash and dry his sheets so it took a bit of time). The nurses though were fantastic, I was absolutely famished (if anyone knows me they know I literally have to eat every two hours or I will be a miserable angry person). My husband wouldn't be back until 9 so that would have been all night and all morning without eating. Our assigned nurse came in and watched him for me so I could run and grab a breakfast pastry. I didn't go far just to au bon pain not even the cafeteria and ran straight up to the room. As I rounded the corner I could hear them talking and giggling over the most adorable baby. It really melted my heart. 

Packed up and ready to drive home! - Boston Children's Hospital 

Close up of his head just as we leave the hospital! - Boston Children's Hospital

The rest of the morning was, thankfully, uneventful. At 10 the Neurosurgeon Nurse Practitioner came in to give us his discharge papers. And at around 11 after packing up we got to head straight home!

Now the real test.... the first night home without nurses and doctors!

We're on the other side!!! - Part I

Benjamin just before surgery - Boston Children's Hospital

Well we made it and I do mean we, me, My husband, and Benjamin! As those who have been through craniosynostosis surgery say, we're on the other side.

Our day officially started at 3 AM, I fed Benjamin as required no later than four hours prior to surgery. He nursed for about twenty minutes and fell right back to sleep so I was pretty thrilled with that. I left him in his pajamas so he wouldn't get cold when I changed him and wake up more. All worked out really well as he slept the hour and a half drive to Boston Children's Hospital. We had to check in promptly at 6 AM. We went up to the third floor to surgery and received instructions on how the nurse liaisons work.

Waiting to start the big show - Boston Children's Hospital

At check in, they confirmed Benjamin's name, our names, his date of birth, and took both of our cell phone number as they will provide updates every 90 minutes. We then had a seat in the waiting room for about a half hour. We were then called in to admitting. My mother came along with us to provide entertainment while waiting but she wasn't allowed in the admitting or recovery area. While in admitting they took Benjamin's vital signs, health history, list of any medications, last feeding, etc. he was put into his Johnny and wrapped in warm blankets and then we waited just a few short minutes. The anesthesiologist "fellow" came around to explain the procedure, review last feedings again, and check vital. Then "the team" came. We spoke with Dr. Proctor about exactly what he was going to do, the risk, and our next steps. The surgery would take ninety minutes to an hour and a half and he would provide updates to the nurse liaison. The surgery, endoscopic, involves cutting an incision the size of an adult mans pointer finger and the bone would be shaved and removed. He would then receive stitches which would dissolve in three to four weeks. We also met his nurse who would be assisting Dr. Proctor with the surgery Lenny (very nice, soft spoken, soothing!) and he lingered to make sure we didn't have any other questions or concerns.

Waiting to go into surgery - Boston Children's Hospital

After that we met the head anesthesiologist, she reviewed again what her "fellow" said and again calmed any fears we had. She offered us to come into the room as they put him asleep but reminded us at this age there really isn't any point. We declined because it would make starting the surgery harder. We trust/trusted the doctors, medicine, and science. Dr. Proctor then gave the word and I had to hand over my baby to the anesthesiologist. I honestly didn't think it would be as hard as it was. It reminded me of bungee jumping, everything in my body told me not to do it and I had to force myself to give them Benjamin.

And just like that, they were off. We were lead back to the waiting room for the two hours. To kill the majority of the time we went to the cafeteria for breakfast because by 7:45 AM we were famished! It definitely killed about an hour which really made it bearable. We then when back to the surgery waiting area and I pumped.

There are two location rooms set up for nursing mothers. They provide a hospital grade Medela pump, the cords, and bottles. No flanges though, which I thought was important to note. You had an endless supply of bottles and stickers. Around the corner there is also a vending machine that sold flanges, location cookies, mothers milk tea, pump parts, etc (I believe all but the food products were Medela too). I had brought my own pump but a hospital one is way more efficient. I did not need to leave my milk since we were staying over but they have an exclusive fridge and freezer for breast milk.

As soon as I was done pumping, it had been an hour and forty-five minutes. I checked in with the nurse liaison and she called in for an update. The nurse in surgery told her they had just finished up and Benjamin would be in recovery shortly. The nurse liaison instructed us to wait in one of the consult rooms for Doctor Proctor. I quickly gathered my husband and mother and off we went to wait (by the way there are multiple waiting rooms, some with tables, some with no food/drink allowed, one with the location room, and way in the back with comfortable couches and arm chairs as well as cookies and coffee). We waited about ten minutes but no sign of him. The liaison nurse stopped by after seeing my mother pacing in the hallway and called in to surgery. Dr. Proctor is very through and waits for his patients to come too and check their vitals personally before he leaves. That was very reassuring to us.

A few more minutes passed and he came out. Told us it went wonderfully, no issues, explained again the surgery, how much bone they took out (the length and thickness of an adult males pointer finger). Also explained wound care, dissolvable stitches, and finally the helmet.

Benjamin's bandage would fall off on its own but until then his head must stay very clean and dry. No baths, no soaking. Then the stitches would dissolve in three to four weeks.  We would have follow ups with Dr. Proctor every two to three months for progress on head shaping and any other issues that would pop up along the way!

Benjamin would definitely have a helmet and Dr. Proctor had made his appointment for us, Thursday at 1 PM. He would be custom fitted and then receive the helmet on Tuesday. The care and instructions would be given then.

He also told us while in surgery Benjamin received Morphine and Fentinol for pain but for going home and over night he would only need tylenol! This amazes me as I'm certain any grown person would be horribly cranky (not that I'd blame them one bit as it is skull and brain surgery!).

That was it, we were then instructed to wait that they'd come get us when Benjamin was moved from surgery to recovery.

We waited about another fifteen minutes and we were finally invited into recovery. Recovery is the same exact room as pre-surgery and the same rules apply, Parents/Guardians only until the child is moved to a room.

Just rolled into recovery - Boston Children's Hospital

Thrilled he doesn't look mugged! - Me with Benjamin at Boston Children's Hospital

Waiting in recovery - Boston Children's Hospital

In recovery we were able to see Benjamin! We couldn't hold him yet as he was monitored like crazy and pain levels were assessed. It didn't matter he was sleeping and we didn't dare wake him! We were given another update on surgery, he had no affects from the anesthesia, they are giving him tylenol for the pain, and they cut his hair! I was sad but hair grows back so I shouldn't care too much. The nice thing is they did save it for us for his baby book.

Benjamin's first haircut - by a Neurosurgeon!

Prior to being rolled out to recovery they fed him some sugar water since he woke up very angry. This was important to note as I wasn't able to feed him for another two hours while we waited for a room/bed.

About forty-five minutes to an hour later we were shown to our room in Mandell 3 - Door 3 (floor 3). This is considered short term stay and is literally connected to recovery (just follow the flip-flops). Benjamin's assigned nurses came out, introduced themselves and then took Benjamin away to his room with us following.

Benjamin, badly swollen

**Okay, I'm about to pass out myself. I will post Part II tomorrow!