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!

Cranio Care Bears - O M G!

Prayers for Benjamin - Cranio Care Bears

So I am a Facebook member of the group "Cranio Kids - Craniosynostosis Support". It's a private group for only people which a child who has some form of Craniosynostois. Let me start by saying this group is AMAZING and so supportive and helpful. I was previously a member of several breastfeeding support groups and I felt judged and belittled when I asked a question... also God forbid you have a difference of opinion. Cranio Kids is everything those groups weren't. I learned a lot about Dr. Proctor, Boston Children's Hospital, Endoscopy, Surgery, Helmet Therapy, etc. I truly feel like we can go into this with full confidence and little risk. Because of this group I am comfortable with mine and my husbands choice to agree to the endoscopic surgery and definitely not be embarrassed by the idea of a helmet (in fact, I'm willing to embrace it and have already started thinking of stickers to buy for Benji). In addition to helpful advice, facts, links, and reference checks for doctors/hospitals, I was directed to the Nonprofit Organization "Cranio Care Bears". Let me start this by saying WOW!

Surgery Care Box from Cranio Care Bears Nonprofit

From their website "Cranio Care Bears goal is to spread awareness, support & compassion through loving care packages to families of children facing surgery for craniosynostosis. Our care packages include items for the child & family to relieve the stress accompanying this very serious surgery. Cranio Care Bears also offers one on one support before, during & after surgery. We strive to bring awareness of craniosynostosis to families & the medical community for early detection." Cranio Care Bears are two cranio moms whose sons had craniosynostosis and underwent surgery. Mom's Summer Ehmann and Shelby Davidson sons both under went CVR.

Cranio Care Bears is pretty amazing. The entire surgery box is free and filled with many necessities you'll need that day and a few extra perks. Benjamin's contained:

1. Prayer Chain
2. Handmade Blanket
3. Handmade Hat
4. Handmade Lullaby CD
5. Two teething rings
6. Pajamas
7. Socks for Benjamin
8. Rattle
9. Shampoo and Conditioner
10. Whisp - teeth cleaners
11. Chapstick
12. Tissues
13. Toothpaste
14. Toothbrush
15. Candy (lollipops, chocolate, skittles, m&m's
16. Gum
17. Pen
18. Bookmark
19. Information guide on Cranio
20. Packing list for the hospital
21. Slipper socks for Mom
22. Tea
23. Emergen C
24. Tylenol
25. Granola bar
26. Cashews
27. Prayer card

It's pretty amazing that they send these out and SO many especially for free! It truly made my day and filled my heart with love and appreciation!

Close up of some of the items in the Cranio Care Bear Boxes

For more information please visit their page and HIGHLY consider donating! This week they posted a picture of 9 care packages they sent out!! Those get costly.  http://craniocarebears.org

Pre-Op

So today was Pre-Op at Children's Hospital in Boston. We arrived at 8:30 for our 9 AM appointment (leaving the house at 7 am, ugh). When we arrived we checked in at Pre-Op to be told that they will see us at 9:30 and not earlier... no big deal as we were starving so we ran down the hall to Au Bon Pain for some breakfast.

At 9:30 we headed back into Pre-Op and was greeted by a medical staff who had us strip down Benjamin head to toe and she measured and weighted him (all the measurements were in metric... I thought that was interesting), and then took his blood pressure and oxygen levels. Once she was done we were returned to the waiting room.

After waiting about ten/fifteen more minutes we were lead in to meet a Nurse Practitioner who took both my and my husbands medical history. She also wanted to know our parents and sibling history as well. That was interesting as my family is long and my husbands is short. She then asked what felt like a million questions about Benjamin. His health, his behavior, his birth, his development/milestones. Being 3 months old there really wasn't much to say. She was able to rule out genetics (as did Dr. Proctor ) just by his history. She did feel his fussiness and vomiting could be due to the heavy pressure the metopic bone has against his nasal bone and eyes. She then walked us through the check in process for Monday and how surgery will go.

For surgery on Monday, we must arrive at 6 AM for surgery at 7:30 AM. She did warn us that even though that was the time given by Dr. Proctor we won't have our true time until Friday night! Benjamin cannot nurse four hours prior to the surgery and no clear liquids (i.e. water, pedialyte, sugar water) two hours prior to the surgery. The Nurse Practitioner gave us two infant size portions of pedialyte to try since I told her, he was an eater! Once Benjamin goes in with the surgeon we can't see him until he's moved into recovery. The surgery is expected to take two hours long and we will have a nurse assigned to use who will give us updates every ninety minutes. Since it's only two hours long we would then only receive one update. Once he is in recovery we can then go in and see him. She told us only one parent can stay over with him as there is only one space for him however parents are allowed to visit 24 hours. My husband said no problem he can sleep on the floor and she stressed that this was never allowed... now we need to decide does he get a hotel or sleep in a "desk" type chair?! We did not qualify for the Ronald McDonald House as that is reserved for cancer patients but there are other families in the area who open their doors to parents. She did not go over wound care, the helmet, or after surgery. Once she was done she took Benjamin's vitals a second time and we were sent back to the waiting room.

After a few more minutes we were greeted by the Anesthesiologist. He took us back to explain his exact process in putting Benjamin to sleep. He informed us at his age and weight the amount needed to place him to sleep is so minimal that they barely can count to three. He also told us that the entire time during the surgery he is in the room constantly monitoring the vital signs and checking on Benjamin to make sure no complications arise. He explained how endoscopic is a fairly simple surgery that moves quick. This is excellent as there is next to no risk for issues with anethstesia. We asked about side effects and I stressed how worried I was after an employee where I worked has problems after having routine surgery due to the anesthstesia. He said for Benjamin the worst would be vomiting. He also asked us if we wanted to be there as Benjamin went to sleep. My husband and I elected not to as personally I don't think I could handle that. The doctor thought it was very wise as our feelings are mirrored by the babies and could cause unnecessary additional stress.

When he was done with us we were brought back to the waiting area and sent up to "the lab" to have blood drawn. He went down the hall and waited for about a half hour. This was probably the worst part of the day. I don't do well with having my own blood drawn. I am fine with blood. I've cut myself, helped my husband when he's cut himself, other family members. I've given birth twice with no concerns, watched animals give birth, watched a chicken get killed, etc but I cannot donate blood as I faint or swell up. Apparently when Benjamin had blood drawn... I can't handle that either I nearly fainted right down. It made for an interesting afternoon. I felt so nauseous the whole afternoon too! Benjamin was miserable. Two phlebotomists had to hold him down to draw from his thigh... just seemed so cruel. After that was over we went back to Pre-Op. We were told we'd meet with the Neurosurgery nurse but she informed the desk she didn't need to see us. I was a little bothered by this as I had several questions but I guess we'll get them answered on Monday.

Finally, we went upstairs to the Department of Neurosurgery to drop off my Family Medical Leave Act paperwork. This will certainly help with work for both me and my husband. Dr. Proctor is going to complete it for us and give it to me on Monday. I did ask the receptionist about why Benjamin never had a MRI or CT Scan and the reason was they don't want to expose them to any unnecessary radiation. I guess that's excellent and he is an expert but I just don't want any surprises on Monday!!

So now we're left to decide do we get a hotel Sunday night to ease getting up Monday morning for surgery or does my husband get a hotel Monday night to help Tuesday when I will most likely be exhausted?? UGHH fun times.

Now I sit here fretting just waiting to get through Monday. It's going to be a long long week and worse made by the snow storm coming Saturday night!

Pre-Op Appointment Scheduled

So we have our Pre-Op appointment scheduled for Wednesday, January 20th at 9 AM. It really isn't an ideal day but when you're meeting the entire team who'll work on your son you don't change the date! Jan. 20th was supposed to be my first day back to work and Lucas' first day of school. I am hoping Lucas can still go to school and my first day back will have to now be the 21st. I am told by the scheduler that this is an all day event of CTScan's, Blood Work, MRI or X-Rays, etc. Joy! His surgery on the 25th will be at 7:30 AM and we must have a prompt arrival time of 6 AM. We are Dr. Proctor's first surgery of the day. So that's good, I think!

Met with the Neurosurgeon!

Today was the day! We took the two and a half hour drive in Thursday morning rush hour traffic to go to Boston Children's Hospital. We got there fifteen minutes before our appointment but still managed to show up ten minutes late because we got so lost inside the hospital!

At arrival, I completed a very brief medical history on Benjamin. Not much to say when he's in perfect health (aside from his head) and only 2 1/2 months old. We then were brought in to be weighted. He weighted 5.9 kilograms or approximately 13 pounds already! I couldn't believe it.

After that the Nurse Practitioner invited us into her office to discuss his history, concerns, and took measurements of his skull. After all that was done we met the Neurosurgeon, Dr. Proctor. He was wonderful, patient, and not at all pretentious as someone I assumed with his experience and accolades would be!

Dr. Proctor walked us through all about Craniosynostosis and the Metopic Suture. He told us it most likely was NOT genetic as if it were he would have other issues. It fused in the womb and is not the cause of his vomiting after feedings... that was just Benjamin. He also told us, after the surgery and helmet his head would not be fully smooth. It would look less noticeable but the sole purpose of this surgery is to allow the brain to grow and develop not cosmetic!!

Benjamin is currently the perfect candidate for Endoscopic surgery, the least invasive of the two options. He would absolutely need a helmet. Looking at his skull right now about 3-4 months but no longer than his first birthday. His helmet would be fitted in Brockton, MA so a lot closer to home than traveling to Boston.

Dr. Proctor then told us time was very important and that he would need surgery right away. As a result his surgery is scheduled for Monday, January 25th! 

He only has a 5% risk of a blood transfusion and we as parents could be direct donors but the risks are so low for transfusion problems that its not necessary. Also being his parents doesn't necessarily mean we would be a match for his blood time. My husband and father still really want to help so if it's to be done it must be done on the day of the Pre-Op (testing) and can not be later or earlier. Best case scenario Benjamin doesn't need it and it will aid another child in the hospital.

Benjamin will need to stay over night in the hospital and we can stay with him, he will have four incisions into the skull and be under anesthesia for it. I can still nurse him before and after but he'll have to fast for four hours prior to the surgery. My husband and I laughed as he is a BIG eater!!

After all of that we met with the scheduler who will call us with his pre-op dates today or tomorrow. So more waiting....

Fingers crossed and prayers said please! I'm getting quite nervous for my baby boy!!

Is it just me....

Is it just me or is it actually happening but the more I look at Benjamin the less I see his ridge (or as I fondly call it unicorn)... I don't know. Today, I woke up and it seemed so tiny.  I mean it is there but just doesn't seem as big. Maybe that's a good sign and it means he won't need surgery at all!!! Maybe I'm getting used to it. I don't really know but this Thursday seriously can't come soon enough!!!


So now, of course enters my good friend google and I'm finding that if Benjamin's proves to be mild they might do nothing and wait until he's one to see if it goes away. Or it could be something as simple as a Metopic Ridge and would become less noticeable as an adult. In fact in my learning travels, I discovered Heath Ledger (actor) had a Metopic Ridge. I went back and googled pictures and sure enough he has one!!

So confused now...

Sure enough, Heath Ledger has a Metopic Ridge!

And so does Hugh Jackman... so things maybe looking up!

Hugh Jackman - Wonder if this is why he's always furrowing his brow?! To hide it?

In Limbo - Questions to ask at the first appointment

So, I'm sitting here during nap time in my house (it's a beautiful two hours) and usually this is when I do work for my job, clean my house, or cook dinner for later on but lately I've been cruising the internet like crazy. I know I know, I can hear people shouting at me to stop googling  but it's in my nature to research everything.

So.... instead of freaking myself out even more I've decided to start jotting down questions I want to ask the Neurosurgeon on Thursday.

• What caused Benjamin's Metopic Craniosynotosis? Is it genetic? If so will it cause any other health issues.

• Is this causing his increased fussiness, inability to bounce or swing without crying/screaming and constant vomiting after feedings?

• Is this causing him any type of pain now?

• Can this cause any long term damage such as delays in development, vision, behavioral problems?

• What type of Craniosynostosis does my child have? Would you consider it mild, moderate or severe?

• Can you describe the type of procedure you are recommending? 

• How long is the hospital stay and overall recovery period?

• When would you recommend my child have the surgery and why? (What is the preferred age at the time of surgery?)

• What are the possible risks/complications if we choose not to have the surgery? 

• What are the possible risks/complications of the surgery?

• Is it likely my child would need a blood transfusion during surgery?

• What type of preoperative testing will be needed?

• Can any preoperative testing be done near home or does it all need to be done at Children's?

• Will my child wear a helmet after surgery?

• Do we need to see any other specialists, such as a geneticist, ophthalmologist, or ENT?

• When do we need to come see you again? How often will we continue to see you?

• What prescription medication does my child need? How often?

• Should we do anything now while waiting for surgery/helmet/follow up visits?

• Are there brochures or other printed material that I can take with me? What websites do you recommend?

• What is the likelihood of future children having the same condition?

First Appointment Scheduled

So today around 2:30, Boston Children's Hospital called us regarding Benjamin's referral. After providing Benjamin's basic information; date of birth, address, guardianship, insurance information, etc., I was transferred to the "Plastics" department as the intake specialist so kindly referred it. This is comprised mostly of plastic surgeons, who diagnose and surgically correct skeletal abnormalities of the skull, facial bones and soft tissue

After providing the same information to the Plastic Surgeon's office staff as the intake specialist, I was stopped mid-sentance when we came up to Benjamin's age. Benjamin will be 11 weeks this Saturday. As a result, the specialist from Plastics told me he would not need to be seen by a plastic surgeon and we were to go straight to Dr. Proctor's office immediately.

Dr. Proctor's office is actually the Cleft and Craniofacial Center (the Plastic Surgeon I learned is also in the same department but a subsection of the center). Dr. Proctor is a neurosurgeons, who performs surgical procedures on a child’s brain, spinal cord or nerves. From the office staff there I learned that Benjamin is of urgent nature due to his age. Babies beyond four months of age are no longer candidates for Endoscopic Surgery and must go through Cranial Vault Remodeling instead. So after taking my information for the third time she told me that Dr. Proctor was in meetings all day but he would want to read Benjamin's information first and she would call me tomorrow rather than make an appointment which could be a month or two away. I ended the call happy knowing we were at least getting the ball rolling.

LESS than an hour later she called back, Dr. Proctor wants to see Benjamin A.S.A.P. As a result she scheduled him for a week from Thursday at Children's. So now we wait.

This could actually turn out to be a really good thing because it means he might be a candidate for Endoscopic surgery with a helmet for 6 months versus the more risky and traumatizing Cranio Vault surgery which slices the skull open from ear to ear and still a helmet could be needed afterwards.

So now, we just sit and wait... or rather the boys wait and I burry myself in research!

Welcome!

Hello and Welcome to my blog. The purpose of this blog is to document my Adventures with Benjamin. Benjamin is my youngest son who has been diagnosed by his pediatrician as having Metopic Craniosynostosis. Craniosynostosis affects only one of every two thousand live births and Metopic Craniosynostosis only affects 27% of all Craniosynostosis births. 

My hope is that this blog will provide me some piece of mind, a place to keep my notes and research, and eventually some hope and guidance for other parents in the world who might share this diagnosis. I know so far the very few youtube videos and websites have certainly given me some understanding as we sit and wait for our appointment at Boston Children's Hospital.