Wednesday, October 5, 2011

A change in plans

Wow, I cannot believe it is already October and Ben is 10 months old! Many big things have happened since the end of June. The weekend of the 4th of July we went to visit Seth's parents along with his brother Jason and his family. While there, Grandma discovered that Ben's first two teeth (on the bottom) had broke the surface. We had a great time hanging out with family that weekend.

Soon after getting home from Grandma and Grandpa's, Ben started sitting up by himself!  After this things started happening pretty quickly for our little guy.  At the end of July he started getting up on all fours and rocking back and forth.  We knew soon, our days of being lazy and sitting on the couch were soon over.

Grammy, my mom, comes to visit about every other Sunday.  She just cannot get enough of him!  Ben really enjoys her visits and they play all day!
In August he began army crawling (more like a rowing action) and was all over the place!  He continued to try to crawl on all fours with much frustration for a couple of months before he gave up and decided his mode of transportation for the time being would be army crawling.  During this time period Ben also began clapping and it is one of the cutest things for us to see to date!    Seth went on his annual float trip with the guys toward the end of August and had a good time.  The last week of August I spent a week in San Francisco for work and it was not only my first five days away from him but also my first night without him.  It was hard for me, but he was in good hands with Daddy.  Seth and I learned how difficult is was to be the only parent in the house and had a "I appreciate everything you do" moment when I got back from San Francisco. 

In September Ben began eating table food and really had done a great job with it.  His favorites are cottage cheese, bananas, french toast, and ravioli.  This month he finally began to crawl on all fours and is pulling himself up and cruising around on the furniture!  Sometimes he forgets he needs to hold on and takes a tumble, but I have no doubt he will figure it out very soon.  Ben has taken to his sippy cup well this past week also.  He had two teeth on the top break the surface at the end of September so he has been having some pain with that and waking up at odd times of the night. 

I am still waiting for Ben to say "mama". That along with him not being able to pick food up with his fingers (fine motor skills) are the only two milestones to date he has not met that are expected at his age.  But, every child is different and I'm sure he will pick it up soon. 

For some time now, I have had uneasy feelings about the surgeon we chose for Ben's upcoming surgery.  I didn't like that he doesn't use a neurosurgeon during surgery and that he is the only one in the United States that does not.  This was a huge concern of mine that had been weighing on my mind for some time.  Seth and I had talked about this issue a couple of times and the decision was made that Dr. Singhal wouldn't be able to practice the surgery if he was not successful without a neurosurgeon and decided to proceed with our original plans to use Dr. Singhal.  At Ben's 9 month check up with his pediatrician, Ben's upcoming surgery was brought up and I voiced my concerns about him not using a neurosurgeon and other worries and she said she was not aware that he didn't use one.  She informed us that the reason she recommended us to Dr. Singhal was because he was the only one that she was aware of that performed the surgery in Kansas City and was adamant that if something doesn't feel "right" then we should seek another surgeon.  This confirmed my mommy instincts and that night Seth and I had another serious conversation about what we should do.  I had a great talk with one of the mommy's on my support website (you know who you are and thank you so much) that lives near Kansas City and I discovered her concerns about Dr. Singhal and they matched mine.  I knew since I joined the the support group website that she used Dr. Fearon in Dallas, but I really never asked why.  The last couple of months I have been doing more research and couldn't find a single person on the website that used Dr. Singhal and that made me very nervous since there are several people on there that live in the area.  I had asked Dr. Singhal's nurse several times for names and phone numbers or if they could contact their patients' parents for me so I could talk to them about their experience with Dr. Singhal and we felt we were dismissed.  They never said they wouldn't do it but never actually put us in contact with them either.  This added to our concerns.  So, after Seth and I discussed things, we decided we needed a new surgeon and my research on the support group concluded that Dr. Fearon is a a very popular craniofacial surgeon for a reason.  He does ONLY surgeries on kiddos with craniosynostosis!  So, he is highly specialized and does about 100 of these surgeries a year.  Also, from pictures I have seen he does amazing work!  I spoke to his nurse and she recommended that I email Dr. Fearon with a history of Ben's diagnosis and some pictures.  I know it sounds crazy but we felt completely comfortable with a diagnosis over email because when you know what you are looking for with craniosynostosis, it is so easy to diagnose by just looking at someone.  I emailed Dr. Fearon and his nurse and his nurse got back to me shortly answering all of my questions.  Even Dr. Fearon emailed me back (on a Sunday-WOW!) also answering my questions.  He confirmed that Ben does need surgery and that he would put him in the moderate category.  We immediately felt comfortable with this surgeon for many reasons.  He impressed us A) He uses a neurosurgeon during surgery, B)  He has done a lot of research and is published a ton of journals, C) He is highly specialized (only 6 in the United States are this specialized), D) He uses procrit injections prior to surgery to increase their blood supply so they have less of a chance of a blood transfusion, and E) He uses Ben's own blood that is lost during surgery and gives it back to him to try and prevent using the blood bank.  I'm sure on the surgery day and afterwards I will complete the alphabet with my impressions of Dr. Fearon.  His insurance specialist has already contacted our insurance company and started the process there.  He is not covered in-network for us, but we do have an out of network plan, so at least we won't be paying $80,000 for the surgery.   I feel they have bent over backwards to make us feel that our son is in the best hands possible.  Although it is bitter sweet that we have a new surgery date that is sooner, October 28th, we feel a sense of relief after choosing Dr. Fearon.  The uneasy feelings I was having about the surgeon and care of my child are gone.  Completely.

Ben started his Procrit injections this past Friday and also his iron supplement this week.  Ben smells like batteries from the iron supplements but it is worth it to make him stronger for surgery  :).  We are a little less than three weeks away from surgery and my anxiety is starting to get the best of me.  I am trying like hell to stay strong but sometimes my emotions get the best of me.  Seth has been my rock through all of this and I couldn't go through it without him.  I have no doubt that we have chosen the best surgeon/surgical team, or that Ben will make it though all of this perfectly, but I am just mad.  I hate that this has to happen to him and wish so much that I could take his place.  But I continue to remind myself that I cannot be in control and that God is.  I give my worries to God every day and pray for strength for Seth and I and health for sweet baby Ben.  I know that He is with us during this time.  Please continue to pray for our little angel. 

In times likes these you realize how many good people are in the world and what great friends/family we have.  All of you have been amazing.  We were surprised and humbled by the generous gift of airfare to and from Dallas donated by our friends Allison and Kyle.  There is no way we can even begin to thank you.  Our other friends Shayla and Bob want to reach out to our friends/family to fill a food calendar for us when we get back from Dallas so we don't have to worry about making dinner.  Thank you so much for being the people you are, this will be a tremendous help.  Again thank you, thank you, thank you to all of your who have supported us through this time.

So, the surgery date is October 28th at 1:30 at Medical City Children's Hospital in the craniofacial center area.  We will leave Kansas City and fly to Dallas on the Wednesday before surgery, the 26th, and then all day Thursday before surgery he will have appointments for blood work, head measurements, pictures, etc.  Ben will be in the PICU for one day and then be moved to a regular room the second day.  After the two days he will be released from the hospital, but Dr. Fearon has asked that we remain in Dallas for a couple of days just in case.  So, we will return home on Wednesday, November 2nd.  I am taking off work through November 13th to care for him.  Seth is only able to take off through the 6th and I'm sure it will be harder for him to go back to work this time than it was when Ben was born.  Seth's parents will be watching Ben the first week of me going back to work which will be very helpful.  Seth's parents are also joining us in Dallas and we are so thankful that they are able to do this.  I'm sure we will need the support.    I plan on blogging while we are there so you can be aware of Ben's progress. 

Please pray for Ben's speedy recovery.  Although my worries consume me I have been told that it is much harder on the parents than it is the child and that they recover so quickly.  We are just looking forward to being on the other side!!!!

Thank you all again.

Breanne & Seth

Monday, June 27, 2011

It's been a while....

Hello friends and family!
I can't believe it has 14 weeks since I have last blogged. A LOT has happened since March 19th. Ben started cereal March 24th and hated it. We tried it for a few more days and decided he was not ready for it.

We were waiting for Ben to meet the milestone of rolling over from his back to his front when we found him on March 30th in his crib on his stomach. We knew we didn't put him to bed this way so knew he was busy learning new things in the comfort of his crib.

Ben also laughed out loud for the first time on April 2nd which was up to date the sweetest thing we had ever heard. We discovered he is very ticklish and used it to our advantage to squeeze out a laugh.

We began Ben on regular baby food on April 17th and it was a hit. His first baby food was squash.

April 23rd we went to Marshall to Papa Tom and Grandma Debbie's house for Easter. Ben received his first Easter presents. Family and friends came over and we had a great day!

My first Mother's Day was a great day. My mother came over, we played with Ben and Seth cooked the two of us dinner and dessert. There is nothing better than being a mother!

On May 14th Ben reached out asking to be held for the first time. Daddy was pretty happy to be the recipient of that!

We scheduled an appointment with Ben's craniosynostosis doctor on May 17th and he weighed in at 17 lbs (50th percentile), 26 inches long (75th percentile) and 50th percentile for his head size. We were happy to hear that his head was still growing since issues can begin when the head stops growing with craniosynostosis.

Ben had his first weekend away from home the weekend of May 20th. We went to Marshall to spend time with Lexie (Ben's aunt) before her high school graduation and to go to Richmond for Catie's (Ben's other aunt) graduation. Ben's great grandma and grandpa watched Ben for a couple hours while we went to Lexie's assembly. They had a good time with him and was impressed on how good of a baby he was. Ben's cousin Taylor has such a good time playing with Ben! On the way to Richmond, we ran alongside a tornado forming in a field next to us. Leaves were picking up and it was rotating on the ground. I had never seen the formation of a tornado that close and I hope I never do again. We floored it to Richmond and made it safely. That tornado completed taking shape and ended up touching down in Waverly. Way to close for comfort!

Bob and Carol Hagedorn hosted a Hagedorn family reunion on June 11th at their house. All the kids enjoyed their swimming pool and the adults enjoyed good conversation. It's rare we all get together and it was nice to see everyone!

Seth celebrated his birthday June 14th and we went out to dinner while a good friend of mine, Allison, watched Ben. She expecting her first child September 1st so she was able to get a little bit of practice.

Our last trip away from home was to the Lake of the Ozarks to visit Ben's Papa and MawMaw on the weekend of June 24th. This was the longest car ride Ben had ever been on. The road trip down to the lake was unpleasant. We didn't time it well and left 1 1/2 hours after his feeding time and then hit rush hour traffic. He had a major melt down on the drive down there, he was crying, I was crying and Seth had white knuckles on the steering wheel. We stopped off in Knob Noster and tailgated for feeding time. I was grateful that the drive down there was an indication on how the weekend would go. He loved the boat rides, water, etc and he slept for 12 hours during the night for the first time. We wore him out! Ben met another milestone while we were down at the lake, he said "da-da" on June 25th. Of course Seth was not in the room when he said it but made up for it by saying it over and over on Monday when we got home. He has such a sweet voice, but I have to say it will sound even sweeter when he says "ma-ma".

Ben is getting closer to crawling every day. It's probably about time to start child proofing our home. He will be on the move before too long. He is also really close to sitting up by himself. Currently he sits for a couple of seconds and then falls over.

Ben's head shape is getting worse and bossing on the top front of his head. The doctor has reassured us that this is normal for kids awaiting surgery.

I have been waiting to blog because when we went to see Ben's craniosynostosis doctor on May 17th and we talked to him about moving up his surgery date. We have been waiting to hear back. We are concerned that he won't get it in before his 1 year birthday because if he has even a little sniffle they will not be able to perform surgery. They said they would do everything they could to move it up so we began to wait. They informed us they would get back to us between 2 and 3 weeks. As impatient as I am I tried calling the scheduler at two weeks to see if she had an update. I didn't get a call back so I tried again at three weeks and no return call. Finally I called and got a hold of the nurse practitioner. She informed me that his date was still set for November 28th. I corrected her in saying, "you mean November 22nd". She said, "No, November 28th, we are no longer doing head surgeries during Thanksgiving". I was furious. Not only did they not move the date to an earlier time as requested, they moved it back and did not call to let us know. I voiced my frustration and the nurse practitioner just informed me that he has a full schedule and that is the best they can do. Seth called and left a message for the scheduler to see if she could do anything and we ended up getting a call back from her a week later letting us know that the date is set for November 28th for now and if they have a cancellation, they will let us know. She said the date is a moving target until a month before the surgery date. Wow, that would have been nice to know ahead of time! So, as it stands now we will not be in the hospital during Thanksgiving but we likely be in the hospital for his first birthday, December 2nd. We will plan on having a birthday party before surgery to make up for him having to be in the hospital.

So, that's all of the updates as of now. I will try to update you more frequently from now on. I am back to school for my MBA and so you can imagine how crazy my life has been with a baby, school and work. Thank God for Seth, he has been a great help in picking up my slack.

Until nextime,

Saturday, March 19, 2011

Surgery date, milestones, etc.

Wow, it's been a month since I last posted. Time flies....

Here are some pictures of his 1, 2, and 3 month pictures. You can really see the changes when you put the pictures side by side.

Benjamin is doing great! He's adapted well to daycare and loves Janet and Doug and all the kids. He has a girlfriend there that likes to give him lots of kisses and cover him up when it is nap time, they are so cute to watch together! His babysitters are so great to him and treat him like a grandson.

This week Ben has bumped up his formula intake to 6 ounces every 3 hours. Every once in a while he decides he doesn't need as much, but typically he is drinking 6 ounces. It won't be long before he has rice cereal in his milk and eating regular food! He went to the doctor last week because he had some congestion and cough and he weighed 13 lbs, 9 ounces. Turns out, Ben had an ear infection. He is such a good baby and rarely ever upset that we would have never known. He is typically sleeping from 10:00 - 7:00!!!! I am excited for his 4 month doctor's appointment (besides the shots) to find out how long he is. I think he has really grown a lot this last month. He is now growing out of his 0-3 month clothes :(. The only good thing about that is I get to go shopping! :)

A milestone for Ben this past week is..... BEN HAS DISCOVERED HE HAS FEET! Who knew feet were so interesting! He has yet to get them to his mouth and it makes him mad that they don't easily reach that far. He has been trying to roll over from back to stomach but has yet to accomplish this. It's so funny to watch him and see his personality take shape. He is definitely got my attitude in that he gets mad and frustrated when he can't do something he wants to be able to do. :) I assume that soon he will be rolling over and having a nice feet treat! Gross!

Ben has great head control and tracks objects very well. Daycare said he is meeting his developmental milestones perfectly which is a relief to us since the craniosynostois can cause some delays. I can't remember if I told you this before but the people who watch Ben while we are at work is a husband-wife team. The lady is retired from the school district and worked with special needs kids and the guy is retired from the post office. The lady is deaf and therefore they teach the kids sign language! At three months they started him with his first sign, milk. I think he starts being able to sign around six months, so it will be nice to know what he wants even though he cannot speak.

We were anxious to let him play in his new toy-the exersaucer and he loves it and is getting the hang of all the toys. It says to start them at 4 months, but we figured it was close enough! It's so fun to watch the brain development that is taking place when he tries to figure out how it all works. Next up, Johnny jumper!

There is nothing better than watching Seth with Ben. He is such an involved Dad and so patient with Ben. He sings to him all the time and makes up songs as he goes. I think he might have a career in writing children's songs-maybe he could be Charlie Sheen's replacement! :)

We got a call last week and they told us Ben's surgery will be November 22nd. The date was bitter sweet. It felt good to be moving forward and have a date so I can plan for it, but we realized we would be in the hospital during Thanksgiving. From what I have read, they are usually in the hospital 3-5 days. His first week of pre-op at home will be during his 1st birthday. I think there is some kind of symbolism there- it gives us a lot to be thankful for and it's like Ben is being reborn and coming home from the hospital for the first time. Being that the surgery is over Thanksgiving, it will give Seth and I some extra time off to take care of our little guy. I have read to plan on 3-4 weeks post op after they leave the hospital. His sleeping pattern will more than likely be messed with and I've heard he'll start acting like a newborn again. I guess the good news is we will more than likely be able to see the Crown Center Christmas lights come on-hopefully they will give us a room with a view!

I found some more pictures that describe the surgery and I think they explain it much better. This diagram shows where they will remove the part of his skull.
And this one shows how the put it back together. It just amazes me something like this can be done and the child is perfectly fine afterwards.

On a side note, Sophia is doing great. Seth built her a ramp for the couch and to go outside. She is using all of them and doesn't seem to be in pain, which we are very happy about.

Seth and I celebrated our 4 year anniversary this past month. Grandma and Grandpa Westin came down and watched Ben while we went out to eat. Grammy Arth watched Ben a couple of weeks ago while Seth and I went and played cards, it was good to get out but I am getting too old for staying up 'til midnight! Ben and I have about the same bedtime these days.

That's about all for now. I hope all of you are doing well. Until next time, take care.

Wednesday, February 16, 2011

Surgery description, Ben's big week of changes, Sophia, etc..

Hello all. I hope this post finds you all well. It's been about 2 weeks since my last post so I will catch you up on what has been going on with Ben and Sophia.

Ben had his CT scan on February 3rd and the results showed no cranial pressure, but did show the metopic suture fully closed. Ben did so great during the CT. We were advised to keep him up until midnight the night before and give him a bottle and let him go to sleep and then wake him up at 4 am and keep him awake until the CT was performed. We thought this would be horrible for him but he did okay. He wasn't happy to be kept awake, but it wasn't horrible. We were able to keep him awake all the way up until we got in the car. On the way to the hospital, I sat in the back of the car to try and keep him awake but I failed :). He passed out! I tried pinching him, tickling him, etc and he didn't respond at all. Normally he doesn't like car rides, but he didn't mind that one since he was so tired. It's weird we have a lab that doesn't like water and a baby that doesn't like car rides, go figure! ;) When we got to the hospital they called us back and he did awesome! He just laid there and the CT took about a minute. What a champ he is! I was so thankful we didn't have to put him under anesthesia. Ben did much better than I did, I couldn't hold back the tears. I think it was some emotions coming out in me because I knew it was the start of a long journey on a path we wished we didn't have to go down.

On a side note, when we called to cancel Ben's surgery with Dr. Igbase (the doctor that does the endoscopic procedure), Seth asked them how many metopic suture surgeries he had performed and the nurse said that he had done one! Really, only one? I think we made the right choice. There is no way I am going to let a doctor operate on my son that has only done the surgery once!

We are awaiting a date for the surgery from Dr. Singhal's office and I will let you know it when I get the call. In the meantime, here are some diagrams from some of my Cranio mom's that helps explain what they do during the procedure. It is much better to see it in a diagram that googling it where you get bloody images that will turn your stomach upside down.

The below is an explanation of the CVR (Cranial Vault Remodeling) and the FOA. From my understanding, the CVR procedure "takes off a portion of the skull on the top and front/sides. The surgeon then cuts and manipulates the skull so that it is placed back on in such a way that the brain has room to grow and cosmetically look better."

The FOA (Frontal-orbital advancement) "helps correct the browline, which is often smaller than it should be. Kids with closed metopic sutures often have a "V" shaped brow line that is too small. The closed suture keeps the brow line from growing at the normal rate. This procedure also helps protect the eyeballs in the orbital socket.

I will ask for more clarification on these two procedures when we see Dr. Singhal again, but for now-that is the information I have on the procedure.

Ben had an eye appointment to check on his lazy eye issue and they said he was fine. So, no worries there.

The week of February 6th was a big week for our little guy. He started daycare on Feb 7th, he slept through the night (10:30 - 5:00) all week, he discovered his hands and puts them in his mouth a lot, he is smiling often, and he got baptised! I love his little smile, it makes my day! Seth's parents and brother (Scott) came in town to see him on his baptism day along with Papa & Grandma Arth, my mom (Grammy), and my sister and brother-in-law-the Godparents (Carie & TJ). We had Seth's parents over for the Superbowl game and some extra cuddle time with Ben for Grandma.

Today we took Ben to the doctor because we wondered if he had pink eye and the doctor confirmed that he did. It sounds like all the kids at daycare have had it and he is the last to get it so hopefully it doesn't spread throughout the kids all over again. The doctor's office weighed him and he is at 12 lbs, 3.5 oz and 23 3/4 inches tall. WOW! He is growing up so fast!
Sophia is doing so much better. She has had two acupuncture treatments and it took some time but she is finally starting to act like herself. She went about 4 days without eating and we were starting to get very concerned. We are so glad she is feeling better!

Thanks again for all the prayers. For now I feel like we are doing well. Since we made the decision on which surgery to go with, I feel like we have been able to move forward and enjoy our little guy.

Sunday, January 30, 2011

Hello all. Sorry it has been a while since my last post. I was going to update you on Friday after the appointment with Dr. Singhal, but we had to take some time to let all the information settle in.

They had a scheduling error and for some reason we were not on the books. They kindly squeezed us in and still ended up spending an hour and a half answering our questions. We really liked Dr. Singhal, he seemed to be a very accomplished plastic surgeon. We asked him many questions just as we did Dr. Igbase and he was patient and answered all of them. Dr. Singhal is adamantly against the endoscopic procedure for several reasons. One being he said he sees patients all the time that had the endo procedure that need second surgeries due to inadequate results. After getting home we called the nurse back and asked how many patients is "all the time", we needed some clarification. Secondly, he did not perform or recommend the endoscopic procedure because he does not believe in doing a procedure that forces the brain to conform to a specific defined area instead of on its own. He says there isn't enough research and follow up later on in life to prove that it works. He had many other reasons, but these were the main concerns. He has been performing the traditional surgery for about 20 years (if my memory serves me correctly) and last year he did 60. Last year Dr. Igbase did 12 endoscopic procedures.

He said if we went with the traditional (big surgery) it would take about 4 hours, 3 nights in the hospital, and 3 weeks post op recovery at home. This is quite significant compared to the endoscopic procedure of 1.5 hours, 1 night in the hospital, and 1 week post op. The risk of a second surgery is at greater risk with the endoscopic surgery. A helmet would need to be worn after the endoscopic procedure for at least 9 months to remold the head. With the traditional surgery, a soft helmet (only worn for protection of the scar) would need to be worn for 3 months. The endoscopic procedure would need to be done by 6 months of age and the traditional would be done between 9 months to a year of age. Dr. Singhal believes that patients are better equipped to handle a major surgery at an older age.

That being said, you can probably imagine why we have been so overwhelmed. We have went back and forth between wanting one surgery over the other for weeks. This weekend we took some time we have decided (unless the CT scan shows something and it is medically necessary to change our minds) to go with the traditional surgery. For us, the endoscopic procedure is just too experimental, without enough proven results. We do not feel that Dr. Igbase has done enough procedures for us to feel comfortable with our little angel. We are still planning on having the CT done on Thursday to ensure there isn't any pressure on his brain or any reason to push up the surgery. We are suppose to hear back from Dr. Singhal's office this week to schedule the surgery and I will let you know what I find out, but more than likely it will be at least 7 months from now.

An update on Sophia.... She is not doing so hot. Every day she shakes in pain when her meds wear off and she yelps when walking around. It is very, very sad. We are going to go see the vet tomorrow and Sophia is getting acupuncture done (I know it sounds crazy, but we just want our little Sophia back). Hopefully this makes her feel a little better.

Thank you again for all your prayers and support. We love you all!

Wednesday, January 26, 2011

Ben's appointment with Dr. Igbase

Today we met with Dr. Igbase at Children's Mercy. He is the neurosurgeon that preforms the endoscopic procedure for craniosynostosis. He confirmed our fears that Ben does have metopic craniosynostosis and he will need surgery to correct it. His procedure would take about 1 1/2 hours to perform, he would be in recovery overnight in the ICU and then the next day he would be able to go home. He recommends I take at least a week off work for Ben's post op recovery. We have a CT scan and an appointment to meet with the craniofacial surgeon that would be working with Dr. Igbase on the surgery. These appointments are both scheduled for February 3rd. The CT scan would be performed in order to map the route for his operation. Ben also has an appointment with an opthamologist on Feb 4th for his lazy left eye. I'm not sure why Dr. Igbase wants this done before the surgery, but he does. We are thinking it is to protect himself from a liability if Ben has eye problems down the road. We are waiting to hear back from the scheduling department, but we are thinking that Ben will have surgery on February 8th. About a week after surgery, Ben would have to start wearing a helmet to reshape of head. This would have to be worn for 9 months to a year depending on the results.

That being said, we are still meeting with Dr. Singhal (a craniofacial surgeon) this Friday. This appointment is for a second opinion and to hear his thoughts on why we should do the more invasive surgery vs. the one that Dr. Igbase suggests. Honestly, Seth and I feel that Dr. Singhal would have to have some pretty compelling evidence of why we should do the more invasive route in order to change our minds. With Dr. Singhal's surgery we would have to wait until he was 9 months to a year old to get the surgery. No helmet would need to be worn with this surgery but there is a lot more blood loss during surgery and the surgery is much more complicated.

We want to thank each and every one of you for your support and prayers. We are so blessed to have such wonderful people in our lives. Seth and I are ready to move forward and past this hurdle so we can focus our energy on the wonderful gift God has given us. Ben is such a wonderful baby and has already brought so much joy to our lives and those around him. I will continue to keep you updated on his progress as the days go by and let you know how the appointment goes on Friday with Dr. Singhal.

Monday, January 24, 2011

Two appointments this week

Hello all! Wanted to give you some updated info. Sophia is doing okay; we are managing her pain with medication still. Friday night when we got home from a date night and she was in severe pain and wouldn't let either of us touch her. She hid in the corner for a while and finally came out and came to bed with us. The next day she was feeling better. We are kenneling her each time we leave the house now so she doesn't get into mischief and hurt herself worse.

Ben is doing well also. He is growing like a weed! After talking to a friend of ours (not naming names on purpose, but you know who you are-and thanks!) that works at Children's Mercy, she mentioned if it were her kid she would want all the information and would want to know about all the procedures that are possible. When I spoke with her she told me about another doctor that treats craniosynostosis very differently. He does an endoscopic procedure that can only be preformed with children at a young age (I forget what age this was) and it is minimally invasive. They cut about a 2 inch opening at the soft spot on the head compared to a incision that is all the way across the top of the head. There is less blood loss, the procedure only lasts about 1 hour vs 3-7 hours with the other procedure, and he could go home the next day vs 3-7 days. To Seth and I it sounds fantastic!!!! We now have an appointment with the doctor that preforms the endoscopic surgery to see if Ben is a good candidate and to get an official diagnosis on Wednesday at 11:30. I will update you with the info afterwards.

We still have an appointment with Dr. Singhal, which it sounds like he is the best in the area for the surgery that he preforms. This is the surgery that is more invasive, etc.

So, for now, the Olson's are just waiting for the doctor appointments and feel a little more at ease because it is all moving forward. Our only concern is that the doctors will try to persuade us to have one surgery over the other and then we will be on information overload and will have a hard time making a decision (not a strong suit for either of us). Of course, we are still hoping that nothing needs to be done at all and that this was all an unnecessary worry... But, at least we have options which I am thankful for and we feel so blessed to have friends and family that support us. Thank you all for all your kind words and prayers. Soon we will be on the other side of all of this! :)

Wednesday, January 19, 2011

Ben's appointment with the craniofacial surgeon and news about Sophia

Ben's doctor was able to get the appointment for the craniofacial surgeon moved up to January 28th (of course the day I go back to work) at 9:30. I really don't know what all to expect from this appointment besides the doctor evaluating him and seeing if he thinks a CT scan or MRI is necessary to confirm or rule out craniosynososis. After this appointment I will update you all.

Although this blog is set up for Ben's story, I'm sure he wouldn't mind sharing due to the amount of people we can reach with this avenue of contact. Last week we took our dog Sophia into the vet because she acted in pain and was yelping when she would walk or get up on furniture. The doctor thinks (he can only speculate without x-trays) that she has intervertabral disc disease, a fancy term for reptured disc. She seems to be in quite a bit of pain when walking or even to go to the bathroom. The vet has her on anti-inflamatories and pain meds for now. We are hopeful that this will go away on its own but he said if it doesn't and she becomes paralyzed, there isn't much they can do. Please keep her in your prayers also.

Damn, when it rains it pours, right?

Tuesday, January 18, 2011

The Good, the Bad, and the Ugly

I will first start by telling you some of the information that many of you already know. My life changed on Thursday, December 2, 2010 when I gave birth to our handsome little boy. He weighed seven pounds and five ounces and was nineteen and a half inches long. His APGAR scores when he was born were very high (8's and 9's) and we were very happy to be blessed with a happy, healthy baby boy. Ben got a hearing test and scared Mommy and Daddy to death. When he was tested, his left ear passed right away but his right ear was another story. In order to pass the test, they measure brain activity while introducing sounds and you have to pass the test by the time the stopwatch gets to 400. He passed on his right ear at 399! Seriously??? The lady administering the test said she thought he had some fluid in his ear and that is why it took so long. I cried when I heard the sound go off saying he passed and the lady hugged me because she understood the way my heart felt because she has a baby of her own that is deaf. She had already listened to my story of my own hardships of losing my hearing in my right ear from bacterial spinal meningitis as a baby. So, the good news, he passed!!!!

Day 2 of Ben's life he developed jaundice and breastfeeding him had to put on hold and he needed to be supplemented with formula in order to get rid of the jaundice and to get his blood sugar to a healthy level. He was not getting enough milk from me and was losing enough weight for the doctors to worry. By the end of the second day his jaundice score was appropriate enough that he was discharged from the hospital without any treatment needed and at this time weighing 6 lbs 13.2 ounces. We couldn't have been more happy or ready to take our baby boy home.

Daddy was so nervous driving home from the hospital with our little angel. He drove like a grandpa but eventually we made it home safely to introduce Baby Ben to our home, and our dogs (Shamus and Sophia). I was thankful I was not the one that had to drive us home. Sophia was curious right away and soon she became very protective and was given the nickname of Nurse Sophia because of the way she reacted to him each time he would cry or make any kind of noise. Shamus on the other hand wasn't as thrilled to have Ben home. He tried to ignore him possibly thinking he would maybe just go away soon (same way he reacted to Sophia when we brought her into our lives), but after a short amount of time, he took on the same curiosity and protective nature as Sophia did early on.

After getting home on Saturday, the pediatrician wanted to see us on Monday to make sure his jaundice was gone. He was gaining back some weight already and the jaundice was no longer a worry. His next appointment was set for Thursday, 3 days later for his 1 week check up. Ben did the unthinkable on day five of his life by rolling over from his tummy to back. As naive new parents, we had no idea this was a very advanced milestone for him. When we told his pediatrician, she was shocked and told us wee should child proof our house now!! We went home and got his milestone on videotape because we figured no one would believe it unless we did so. His one and two week check up came and went without any issues and we were starting to adjust to our new schedule at home nicely. I was on top of the world, I had so much love in my heart for Ben, Seth and everyone in my life and I was recovering and losing weight from giving birth and pregnancy nicely. By week one I had lost 20 pounds and by week two a whopping 30 pounds!! The only set back for me was a bladder infection.

By Ben's two week appointment he had gained back his weight plus a few ounces (7 lbs, 9 ounces and 20 1/4 inches long). The doctor said that he could go one feeding of waiting for 5 hours if he would. We were looking forward to this since we were lacking in our usual amount o f sleep, but as of today (6 weeks, 5 days) he has yet to do this, but I hear this is pretty normal for his age. Things were settling in well at our house. Shamus had accepted Ben as a new addition to the family and Sophia continued to welcome him. I loved staying home with him and watching his every move. The first two weeks were very emotional with all the hormones, but it seemed like, as soon as the two week mark came and went, so did the tears. Also at the two week point I had to make a decision to stop trying to force breastfeeding on him. Each time I tried he would get angry ad push me away. I would try for ten minutes as directed and each time when he pushed it away, and then I would end up pumping and feeding it to him. Seth saw my frustration over it and told me it was time to make a decision. I made the decision to no longer force breastfeeding on him since he clearly was not a fan and continued to pump and bottle feed him exclusively. This went well. I was able to offer him breast milk which offered all the benefits and also allowed Seth to enjoy the feeding times.

Ben's first month check up went well, now weighing 9 pounds, 9 ounces and 22 1/2 inches long. This put him in the 25th percentile for his weight and 50 percentile for his height. His pediatrician informed us that she believed his soft spot on the top of his head was closing prematurely and noticed his head was a bit triangular shaped with a ridge on his forehead. She wanted to re-evaluate it at his two month appointment. She mentioned that if it was more closed, she would have some tests run. She informed us that surgery would be the remedy of this condition. We didn't think much about it and scheduled our two month appointment.

On Thursday, January 6th, Seth noticed when changing his diaper that it had blood in it. Again, we didn't think much of it, but monitored the following diapers. On Friday, he had another bloody diaper and we immediately called the doctor and they requested we bring him right in. They tested his stool and it tested positive for blood. The doctor believed he may have an allergy to milk and recommended I restrict my diet (since I was still pumping and bottle feeding him) and then drop off a sample on Monday after having no dairy in my system and his. Since we were seeing a different doctor because his pediatrician was out of the office, and to get a second opinion, I asked the doctor about his soft spot growing together too quickly and asked if she noticed anything. She indeed confirmed that he had a triangular shaped head and a ridge on his forehead. She said to follow up with his regular pediatrician the next time we see her. She also believed he had a lazy left eye and advised we get it looked and so it can be corrected early. I thought, "Great, sorry I asked." Ben had developed a diaper rash around the one week mark and just would not go away. We tried three different diaper rash creams with no sign of improvement. At this appointment the doctor also prescribed a compound rash cream that proved to work within a day or two. Saturday he became colicky and was cramping up every time he ate and his sleep patterns were affected from waking up from two to three times a night to several times. On Monday we took a stool sample to the doctor's office and it tested negative for blood which lead the doctor to further believe it was a milk allergy. She explained to us that most babies that are allergic to milk are also allergic to soy therefore we needed to either continue to remove milk and soy out of my diet while feeding him with my current method or put him on hypoallergenic formula. With a hard decision to make and the anxiety of not being able to eat very many things, (I found the two ingredients are in almost everything), with a heavy heart I made the decision to put him on formula. I was surprised by the sadness I felt by not giving him "special mommy's milk", but over time got over it. The colicky behavior lasted from Saturday through Tuesday and by Wednesday we saw some improvement. The dairy must have begun to work its way out of his system. We were so relieved because it was so hard to see him scream at the top of his lungs and know that there was nothing we could do to soothe him. As of today the formula was a great choice and he no longer has the cramping during and after feedings. The only downside of it is it is a very expensive option, but we'll make it work.

I had my six week checkup with my OB doctor and in order to get a third opinion I asked her if she noticed anything wrong with his head. She said "Unfortunately, yes, he has craniosynotosis, doesn't he?" I think my reaction was a foul word followed by "maybe". So this being our third doctor to evaluate him and see what we hoped was nothing, was a realization that our fear might be coming true. I began to do some research on craniosynotosis and I have gone from knowing nothing about it to knowing alot and have also found a great support group online called Cranio Kids. I will give you some information (below) so you can understand what might be going on.

According to the Mayo Clinics website,

"Craniosynostosis is a birth defect in which one more of the joints between the bones of your infant's skull close prematurely, before you infant's brain is fully formed. When your baby has craniosynostosis, his or her brain can't grow in its natural shape and the head is misshapen. Craniosynostosis can affect one or more of the joints in your infant's skull. In some cases, crainosynotosis is associated with an underlying brain abnormality that prevents the brain from growing properly. Treating craniosynostosis usually means your infant needs surgery to separate the fused bones. If there's no underlying brain abnormality, the surgery allows the brain adequate space to grow and develop. Your infant's skull has seven bones. Normally, these bones don't fuse until around age 2, giving your baby's brain time to grow. Joints called cranial sutures, made of strong, fibrous tissue, hold these bones together. In the front of your baby's skull, these sutures intersect in the large soft spot (fontanel) on the top of your baby's head. Normally, the sutures remain flexible until the bones fuse.

Craniosynostosis signs in general include:

-A misshapen skull, with the shape depending on which of the cranial sutures are affected
-Abnormal feeling "soft spot" (fontanel) on your baby's skull
-Early disappearance of the fontanel
-Slow or no growth of head as your baby grows
-Development of a raised, hard ridge along affected sutures
-Increased pressure within the skull (intracranial pressure)

The signs of craniosynostosis may not be noticeable at birth, but they will become apparent during the first few months of your baby's life.

Common types and characteristics are Sagittal synostosis, Coronal synostosis (anterior plagiocephaly), and Bicoronal synostosis (brachycephaly).

Rare cases and characteristics include Metopic synostosis (trigonocephaly) and Lambdoid synostosis (posterior plagiocephaly). Ben's pediatrician thinks he may have Metopic Synostosis.

The metopic suture runs from the baby's nose to t he sagittal suture. Premature fusion gives the scalp a triangular appearance.

The cause of craniosynostosis is unknown. However, there's a heredity component to craniosynostosis when it occurs with certain genetic syndromes such as Apert's syndrome and Crouzon syndrome. Besides misshapen heads, infants with these syndromes often have seizures, blindness, developmental delays and mental retardation.

If untreated, increased intracranial pressure can cause these conditions:
-Brain damage
-Death, in rare instances

In addition, facial deformities that affect the middle of your child's face may case:
-Upper airway obstructions, compromising your baby's ability to breathe
-Permanent head deformity

For other infants, surgery, usually during infancy, is the primary treatment for craniosynostosis. However, the type and timing of surgery depend o the type of synostosis and whether there's an underlying syndrome.

The purpose of surgery is to relieve pressure on the brain, create room for the brain to grow normally and improve your child's appearance. A team that includes a specialist in surgery of the head and face (craniofacial surgeon) and a specialist in brain surgery (neurosurgeon) often preforms the surgery.

Traditional surgery. The surgeon makes an incision in your infant's scalp and cranial bones, then reshapes the affected portion of the skull. Sometimes plates and screws, often made of material that is absorbed over time, are used to hold the bones in place. Surgery, which is performed during general anesthesia, may take up to seven hours.

After surgery, your infant remains in the hospital for at least three days. Some temporary facial swelling is common after surgery. Complications are rare. Some children may require a second surgery later because the synostosis recurs. Also, children with facial deformities often require future surgeries to reshape their faces."

After reading this, you are probably:
A) Very tired
B) Are as concerned as we are
C) You now know the reason I have created this blog

Today, Ben's pediatrician gave us a referral to a specialist and we are in the process of setting this appointment up. The earliest the craniofacial sugeun at Children's Mercy said they could see us was February 23rd and Ben's doctor was not satisfied with that and so she has a call into the doctor's office to see if she can move the date up. Writing all of this brings me great sorrow, but is also somewhat therapeutic to write (talk) about it. I have my good days and my bad...

I will keep you all informed via this blog. For now, please pray for our little angel.

See pictures below.

With love,
Breanne & Seth