We had Amelia's pre-op appointment this morning and we got a lot of our questions answered. The first thing Kim Uhrich told us when we came into the exam room was that the surgery is going to be Friday. The OR scheduler said Thursday is just too full. (This is good news because yesterday she told us we might not get a final answer until Wednesday afternoon!) We were so relieved to have the scheduling issue decided and not have to bring it up during our meeting with the surgeon. Also we found out she is the "first case" which means her surgery will be at 7 am or so, and I'll be allowed to feed her up until 3 am, which is very good news.
Kim went over a lot of specifics of the surgery and we signed some consent forms. Then they sent us up to pre-care where we met with someone from the anesthesiologist's team, and Amelia had to get blood draw. They tried to numb her arm with some ELMA cream but unfortunately they couldn't get the vein on the first try and had to try again on her un-numb arm. She cried..a lot, but it was over relatively quickly (even though it seemed to take forever at the time). We were comforted to realize that all of the other uncomfortable procedures that lie ahead will be done after she is under anesthesia.
After that we got a chance to meet with Dr. Perry (the pediatric neurosurgeon). He was very friendly and sweet with Amelia. She took to him and was touching his face and being sweet with him. Finally Dr. Van Aalst came in to meet with us (along with another RN and another MD who is doing a fellowship with him). He apologized again, and then gave us a very detailed description of how the surgery takes place. We felt very good about our interactions with both surgeons.
The only problem we now face is that BOTH Mya and Owen woke up this morning with pretty bad colds--sneezing and very runny noses! (Thanks to Kelly for risking the health of her own kids to care for our sickies while we were at the hospital). Needless to say, we are doing everything we can to prevent Amelia from getting it. Lots of hand washing and hand sanitizing and trying to get them to keep their distance, but it's tough because they love her so much! We want to keep her healthy without making them feel like lepers! The nurses told us that if she does get a cold, there is a chance the surgery would have to be postponed--especially if she were to get a fever. So that's our big prayer request for the day: PRAY FOR AMELIA TO STAY HEALTHY and Mya and Owen to get well quickly. My mom will arrive tomorrow night so she will be a big help in keeping the kids busy and away from Amelia.
So that's the latest. Keep the prayers coming--we definitely feel them carrying us through!!
Tuesday, July 31, 2007
Sunday, July 29, 2007
More About Amelia's Condition
Below is a more thorough explanation of Amelia's condition which I copied from a pamphlet on craniosynostosis from the Children's Craniofacial Association website. Most of this is information we've already learned in the past 5 months, but this is just a concise explanation for anyone who wants to know. There is also a detailed explanation of the surgery to inform your prayers for her.
But before we get to the boring medical stuff, here are some pics to enjoy! :)
Here is a picture of Amelia when she was just a few weeks old. You can sort of see the ridge on her forehead.
As she has grown the ridge on her forhead has become less noticeable (probably because we're too busy looking at those beautiful eyes!), but it is still there. It is easier to see the narrowness of her forehead when you look at her head from the top down, but since no one generally takes pictures of their kids from that angle, here are a few other ones instead.
Amelia and Daddy
"At the gym" with her big brother.
Chillin' with her big sis.
What Is Craniosynostosis?
Craniosynostosis is a medical term that literally means fused
bones of the skull. It is a condition that some children are born
with or later develop. The skull is abnormally shaped because of the
fusion of skull bones.
To better understand craniosynostosis,it is helpful to know that our
skulls are not made up of one single “bowl”of bone. Instead,
different bones that fit together like a jigsaw puzzle make up the skull.
The areas where the bones meet one another are called sutures. As a
baby grows, the brain rapidly increases in size. According to current
theories of growth, the growing brain pushing on the bones of the
skull causes the skull bones to expand or grow. Much of this growth
occurs in the areas of the sutures where the bones meet. When one of
the sutures fuse,it is called craniosynostosis. There will be no growth
in this area. This inability to grow in one area may lead to overgrowth
in another area. This results in an abnormally shaped skull.
There are numerous types of craniosynostosis. Different names
are given to the various types of craniosynostosis. The names
depend on which suture or sutures are involved.
(Amelia's condition is called trigonocephaly)
Trigonocephaly is a fusion of the metopic suture. This suture runs
from the top of the head,down the middle of the forehead,toward
the nose. Early closure of this suture may result in a prominent ridge
running down the forehead. Sometimes the forehead looks quite
pointed. It resembles the bow of a boat. Frequently, the eyes are
closer together.
What is the surgical procedure for repairing this condition?
The surgical technique for correcting the problem varies with the
type of craniosynostosis, but all have certain things in common.
Surgery is only considered for these children after a pediatrician,
trained in this field, certifies the child can tolerate the anesthesia
and the operation. One of the greatest risks to the child comes from
the general anesthetic. It is necessary for an anesthesiologist, well
experienced in this type of surgery in young children, to be present
during the entire procedure. The surgery is usually performed by two
specialists working together. One is a craniofacial surgeon and the
other is a pediatric neurosurgeon. The craniofacial surgeon is a
plastic surgeon who has received additional training in pediatric
craniofacial surgery. It is common for an incision to be made in the
hair from one ear to the other ear, across the top of the head. This is
usually the only scar from surgery. The hair usually hides the scar.
After this incision is made, the neurosurgeon removes the affected
areas of the skull and forehead. The craniofacial surgeon reshapes
these bones and returns them to a normal position. Once the
procedure is finished, the incision is closed usually with dissolving
sutures. The child is then taken to the pediatric intensive care unit.
The routine is different among the various centers. Children
typically spend the first night or two in the intensive care unit. They
then go to the regular pediatric floor. Children are normally sent
home on the third to fifth day following surgery. Generally, children
experience only minor discomfort from this operation. There is little
pain from the cutting of skull bone. By the second day after surgery,
most children need nothing more than Tylenol. It is also common for
both eyes to swell shut for about three days after surgery. Not being
able to open one’s eyes annoys the child the most. After the child is
discharged from the hospital, the family may be asked to stay in the
area for another few days before returning home. This allows the
treating doctors to make sure there is a good chance that there will
be no major complications. Between six weeks to three months after
surgery, the child returns for follow-up visits. The surgeon usually
sees the child once a year thereafter.
But before we get to the boring medical stuff, here are some pics to enjoy! :)
Here is a picture of Amelia when she was just a few weeks old. You can sort of see the ridge on her forehead.
As she has grown the ridge on her forhead has become less noticeable (probably because we're too busy looking at those beautiful eyes!), but it is still there. It is easier to see the narrowness of her forehead when you look at her head from the top down, but since no one generally takes pictures of their kids from that angle, here are a few other ones instead.
Amelia and Daddy
"At the gym" with her big brother.
Chillin' with her big sis.
What Is Craniosynostosis?
Craniosynostosis is a medical term that literally means fused
bones of the skull. It is a condition that some children are born
with or later develop. The skull is abnormally shaped because of the
fusion of skull bones.
To better understand craniosynostosis,it is helpful to know that our
skulls are not made up of one single “bowl”of bone. Instead,
different bones that fit together like a jigsaw puzzle make up the skull.
The areas where the bones meet one another are called sutures. As a
baby grows, the brain rapidly increases in size. According to current
theories of growth, the growing brain pushing on the bones of the
skull causes the skull bones to expand or grow. Much of this growth
occurs in the areas of the sutures where the bones meet. When one of
the sutures fuse,it is called craniosynostosis. There will be no growth
in this area. This inability to grow in one area may lead to overgrowth
in another area. This results in an abnormally shaped skull.
There are numerous types of craniosynostosis. Different names
are given to the various types of craniosynostosis. The names
depend on which suture or sutures are involved.
(Amelia's condition is called trigonocephaly)
Trigonocephaly is a fusion of the metopic suture. This suture runs
from the top of the head,down the middle of the forehead,toward
the nose. Early closure of this suture may result in a prominent ridge
running down the forehead. Sometimes the forehead looks quite
pointed. It resembles the bow of a boat. Frequently, the eyes are
closer together.
What is the surgical procedure for repairing this condition?
The surgical technique for correcting the problem varies with the
type of craniosynostosis, but all have certain things in common.
Surgery is only considered for these children after a pediatrician,
trained in this field, certifies the child can tolerate the anesthesia
and the operation. One of the greatest risks to the child comes from
the general anesthetic. It is necessary for an anesthesiologist, well
experienced in this type of surgery in young children, to be present
during the entire procedure. The surgery is usually performed by two
specialists working together. One is a craniofacial surgeon and the
other is a pediatric neurosurgeon. The craniofacial surgeon is a
plastic surgeon who has received additional training in pediatric
craniofacial surgery. It is common for an incision to be made in the
hair from one ear to the other ear, across the top of the head. This is
usually the only scar from surgery. The hair usually hides the scar.
After this incision is made, the neurosurgeon removes the affected
areas of the skull and forehead. The craniofacial surgeon reshapes
these bones and returns them to a normal position. Once the
procedure is finished, the incision is closed usually with dissolving
sutures. The child is then taken to the pediatric intensive care unit.
The routine is different among the various centers. Children
typically spend the first night or two in the intensive care unit. They
then go to the regular pediatric floor. Children are normally sent
home on the third to fifth day following surgery. Generally, children
experience only minor discomfort from this operation. There is little
pain from the cutting of skull bone. By the second day after surgery,
most children need nothing more than Tylenol. It is also common for
both eyes to swell shut for about three days after surgery. Not being
able to open one’s eyes annoys the child the most. After the child is
discharged from the hospital, the family may be asked to stay in the
area for another few days before returning home. This allows the
treating doctors to make sure there is a good chance that there will
be no major complications. Between six weeks to three months after
surgery, the child returns for follow-up visits. The surgeon usually
sees the child once a year thereafter.
Friday, July 27, 2007
The Latest
Got a message from Kim Uhrich this afternoon that she has rescheduled Amelia's pre-op appointment for Tuesday morning at 8:30 a.m. She said the surgery will more than likely be on Friday, but moving the pre-op allows us to meet with Dr's Perry and Van Aalst ahead of time on the outside chance that the surgery does end up being moved to Thursday. She said she'd call me Monday and I'm guessing we'll have the final answer by then.
I wish I had time to write a thougthful entry about how today's events have affected my soul. One thing--trusting God when all my expectations fail and being reminded that He is the only one in control here. Now I'm off to pick up a fussy Amelia (who at the moment is being entertained by her big sis Mya), make dinner, clean up and spend the rest of the night baking birthday cakes for Mya and Owen's party tomorrow. That should be a fun diversion from all of this. ;)
Love to everyone. I'll post again when I know something certain about the surgery schedule or after the pre-op--whichever comes first.
I wish I had time to write a thougthful entry about how today's events have affected my soul. One thing--trusting God when all my expectations fail and being reminded that He is the only one in control here. Now I'm off to pick up a fussy Amelia (who at the moment is being entertained by her big sis Mya), make dinner, clean up and spend the rest of the night baking birthday cakes for Mya and Owen's party tomorrow. That should be a fun diversion from all of this. ;)
Love to everyone. I'll post again when I know something certain about the surgery schedule or after the pre-op--whichever comes first.
Another Update
Between changing diapers, getting kids dressed and feeding Amelia I managed to call the case manager (Dr. Van Aalst's assistant, Kim) and ask what is going on. She said she knows I have made plans around the 3rd and would call me back. A few minutes later I got a call from Dr. Van Aalst himself and the first thing he did was apologize. He said that Amelia's care is his number one priority. He then went on to explain that he is NOT leaving town, but has another obligation in town on that Friday (I was too chicken to put him on the spot and ask him, but I will ask his Kim when she calls me again). He said he contacted the OR scheduler to see if he could do the surgery on Thursday afternoon, but if that is not possible then the Friday surgery still stands. He assured me that it will take place either Thursday or Friday of next week.
Still pray for the details of changes in pre-ops, my mom's ability to get here Wed instead of Thurs, and obviously for the surgery date to be finalized.
I will update again soon. Keep the prayers coming--they are working!!!
Still pray for the details of changes in pre-ops, my mom's ability to get here Wed instead of Thurs, and obviously for the surgery date to be finalized.
I will update again soon. Keep the prayers coming--they are working!!!
Urgent Prayer Request
A few minutes ago I received a call from the OR scheduler that Dr. Van Aalst will have to leave town next Friday August 3rd--Amelia's surgery date. Her surgery cannot take place on that day. She did not give me any explanation as why and I don't think she knows herself. She is going to be working hard to try to re-schedule the surgery for Thursday August 2nd--but this depends on a number of factors including OR availability and surgeon's schedules, not to mention re-scheduling the pre-op appointment. Dr Van Aalst will not be back in town until August 20th. I will be contacting Dr. Van Aalst's assistant as soon as I have a moment to try to make sense of this.
I feel like I have been kicked in the stomach.
Brian and I talked and he reminded me that God has Amelia's best in mind and He knew this was coming...
Please pray that we would get the surgery date that is best for Amelia, whether August 2nd or otherwise, and that we would continue to find our strength in the Lord.
I feel like I have been kicked in the stomach.
Brian and I talked and he reminded me that God has Amelia's best in mind and He knew this was coming...
Please pray that we would get the surgery date that is best for Amelia, whether August 2nd or otherwise, and that we would continue to find our strength in the Lord.
Wednesday, July 25, 2007
Amelia Update
Our sweet girl will have surgery next Friday August 3, 2007. Her pre-op appointment, originally scheduled for tomorrow, has been changed to next Thursday, August 2nd.
After nearly five months of anticipation and dread, we are only one week away from this big event. And our little Amelia has no idea what she is about to go through...
Tonight we took her to church where some of the elders spent time praying over her and our family. One person prayed that the Holy Spirit would hover over Amelia during the surgery and another prayed that she would sense the Lord's presence as if it were her own mother or father there with her during the surgery. During the prayer she sat sweetly sucking on a teether and looking around smiling at whoever was praying. We know that these prayers and the prayers of many others will carry Amelia and us through this experience, and we are so grateful for the network of family and friends that God has provided to support us in this journey.
We'll keep you posted as things progress... In the meantime here are a few helpful links about the surgery:
Very helpful info for families of children with craniosynostosis
Info about the surgery
Info about the craniofacial surgeon, Dr. Van Aalst
Info about the pediatric neurosurgeon, Dr. Perry (sorry no picture)
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