surgery scheduled

Surgery is scheduled for next Friday (July 6th). We won't have an actual time until Thursday afternoon though.

The consult with the neurosurgeon went very well. She gently but efficiently explained to us the procedure and answered all of our questions.

He will be in surgery for about 3-4 hours. The first day he will spend in the ICU. He will be in the hospital for 3-4 days. There will be an incision from one ear, over the top of the head, to the other ear. She will take out the part of his skull which is fused shut and make some other cuts in it that will help reshape his head. More than likely he will need a blood transfusion. Nick is going to try and donate for him but there is a tight timeline.

He will not have to wear a helmet but because there will be no reconstruction (the bone will grow back in time) we will have to be very careful with his head, especially when he starts crawling and etc.

Well, that's what I know for now. I'm off to try and get some sleep.

tomorrow

We are back from the doctor's office. The surgeon called our ped. as soon as she read the scans (Porter obviously overnighted them). We have an appointment with her tomorrow in Indy at 1:30 pm. All we know is that he indeed has sagittal synostosis and they want to do surgery within a week's time. (tentatively scheduled for next Friday) His age is definitely a concern. This surgeon usually does this surgery at 3 months old. This is all we know right now but I will of course update after the visit tomorrow. Thanks for your continued prayers.

nervous

The pediatrician's office called this morning. Amber (the nurse we have grown quite fond of) asked if we could come in sometime today with Andrew to talk to the doctor. It kind of caught me off guard and I asked if they had heard from the surgeon. Yep, they have.

We will be going to the office around 3:00.

So now I am nervous. It's the butterflies in the stomach, can't eat, concentrate or even function - kind of nervous. My guess is that we will be told that he has to have surgery for the cranio and just basically what we already suspect. But what if there are surprises? What if there is something else? (not that surgery on your baby's skull isn't bad enough.) It's a scary feeling not knowing, even scarier when you are about to find out.

I'll let you know.

still waiting

Unbelievable.

We signed in at the ped's office and the nurse starts to tell me what trouble they have had with Andrew's CT scan. They have been on the phone with Riley's and Porter for the past two days trying to find the CD of the scan that was supposed to be in the hands of the neurosurgeon like 2 weeks ago. I guess Dr. M. was getting irate with someone at Porter yesterday. Bottom line....the scan got lost, the neurosurgeon never received it, and we still have zero answers.

We did find out that if the surgeon doesn't deem his case an emergency, she doesn't have any openings to even see us until October. To our knowledge it shouldn't be an emergency BUT it IS time sensitive. All the info I have read on cranio says that surgery is usually done between 2 and 6 months. He is 4 months old now.

So, the cd has been sent (UPS) to Indianapolis again and we should hopefully hear something this week. Our ped. said that if she doesn't know something by the 8th (she's going out of town for the 4th of July holiday) that we will search for another surgeon probably from University of Chicago.

Again, please, please keep us in your prayers. The whole situation is just wearing on us. Stress levels are high for both Nick and I. We really want to get things going. The older Andrew is, the harder the recovery will be on him.

frustrated

I called the pediatrician this morning and left a message reminding her that we still had not heard from the neurosurgeon.

About an hour ago they called me back to let me know that they called Riley's and found out that the surgeon is on vacation for the week. Now, I guess I'm frustrated because this doctor had the CT scan before the end of last week. I feel that she could have either looked at them or at least informed us she wouldn't be able to until she came back.

We have discussed looking for another surgeon but it will take just as long, if not longer, to get another referral set up and everything. ugh.

I have a hard time being patient in ordinary circumstances so this is just hard.

Well, I will leave you with some cute pictures of the baby that I took a couple of days ago. He is 16 weeks old now and getting so big.

father's day

Yesterday was really nice.

After church we all went to Cappo's for lunch with my mom and Dan and Nick's mom. We went to the Fuzz Folie's (spelling?) car show afterwards. Unfortunately it was almost over. Disappointed, we invited our parents and the Lambert's over for a cookout. We went swimming, ate burgers and played the bean bag toss game that I bought Nick for Father's Day. When it started to rain we all came inside and played dominoes. Good times.

(We don't yet have any new news on Andrew. Still waiting on the surgeon in Indy to give us her opinion. I'll update as soon as I hear something.)

happy stuff

With all that's happened lately I haven't posted some of the good stuff that's been going on.

Last week the kids had their last day of school. My Joshua graduated Kindergarten. They had a nice little awards ceremony. He was so proud (and so was I). He received many awards one of them being for Outstanding Reading. He scored amazingly well on his Indiana State Standards.



Jimmy turned 15 on the 5th. That night Nick took him to get his driver's permit. He's almost done with the classroom part of driver's ed and will be starting his driving practice next week. It's unbelievable to me that he's old enough to drive. He did exceptionally well with his grades this year (straight A's). He earned many awards. He was part of the National Junior Honor Society (for his second year), Vice-President of his class, and received Perfect Attendance. He also received numerous academic awards.



Nicholas kept consistently good grades all year. He is really blossoming into his personality. He is just like his father, a sarcasm master and sometimes a bit on the "snarky" side. We were told numerous times by his teacher that he is by far the most popular boy in the class. The kids looked up to him and followed whatever he did. He was also the class clown. This in itself is amazing. Does anyone remember that 4 year old who didn't interact well with other kids?

Steven has made such wonderful progress this past year. The beginning of 6th grade started out a little shaky but he really pulled through in the end. He brought up almost every one of his grades. He did exceptionally well in band. He really enjoys the trumpet. It is hard to believe he's now a 7th grader.

Last weekend, with the help of many friends, we finally got the pool up. What a relief for Nick to have that off of his plate. We still need to add on to our deck but that will come in time.




Andrew even went swimming yesterday. He really enjoyed it. Here he is in his swimming attire.

small update

Our pediatrician called late this afternoon. She was able to get in touch with a pediatric neurosurgeon in Indianapolis. We are scheduled for a CT scan in the morning here at Porter. The scans will be sent to Riley's and then the surgeon will let us know what she sees. (her name is Dr. Jody Smith)

That's all we know for now. Thank you everyone for your overwhelming amount of support. I can't tell you how many phone calls and emails we have recieved from our friends and family. I thank each one of you for your thoughts and prayers.

craniosynostosis

We had an especially painful weekend.

Thursday night I wasn't able to sleep and decided to get up and get online. I have visited this site called babycenter since I first found out I was pregnant. They have a message board called "birth clubs" where you can talk to other women that have babies that are the same age as yours. Anyway, I logged on and came across a thread that was titled "Craniosynostosis". It was about a mom who's 4 month old was just diagnosed with a birth defect having to do with the skull. As most of you know, Andrew has a "funny" shaped head. Nick and I have been concerned since he was first born. The doctor's have told us continuously that it is due to his being breech in the womb and that eventually it would get better. Unfortunately, it has not.

While reading this thread at 2:30 in the morning, I followed some of the links that were given in relation to craniosynostosis. I read a lot of text and found photos that showed the deformities. They looked just like my baby.

The visible symptoms are:

• ridge along top of the head
• very protruding forehead
• narrow, elongated head shape
• no soft spot

He has every one of these symptoms. The lack of his soft spot is something that seems to have just developed. Nick and I recently noticed that where his soft spot should be is now hard and is beginning to bulge.

In the morning we called his pediatrician and scheduled an appointment for that day. The doctor sent us for immediate blood work and skull x-rays. The blood work came back normal (ruling out encephalitis) but the x-rays indicated craniosynostosis. From my understanding craniosynostosis is a fusing or premature closing of the sutures of the skull. This prevents the brain from being able to grow in a normal way and can (but not always) cause intracranial pressure and sometimes developmental problems.

The only treatment for this is surgery. The surgery is very invasive and very scary. There is an incision from one ear, over the top of the head and to the other ear. They have to go in and cut out a sizable portion of the skull and try to reshape it. Here is a link to some before and after pictures of another little boy who had the surgery. Warning - it is very graphic and disturbing. Colin's Surgery

We are now waiting on a referral to a neurosurgeon and have to get a MRI scheduled at University of Chicago. Please keep us in your prayers. All of us. It is a really scary and emotional time for our entire family. I will try and keep my blog updated as we find out times and dates.