Sunday, March 30, 2008
Then this evening we met with our small group from church....friends we've known for a long time. We were blessed as they gathered around us and prayed for Leah and her surgery. We feel loved and are SO grateful to have all of your prayers and support! I know without a doubt the strength I feel on a daily basis as I care for my family is a direct result of prayer. Thank you as you continue to pray for Leah and our family!
Please pass Leah's blog to others!!!
Wednesday, March 26, 2008
He said that she has a 40% chance of needing a blood transfusion. It would be a 70% chance if we were having the traditional "open" CVR surgery. He mentioned "direct donor" blood for Leah and told us how to go about having people donate blood for her. We still have to find out Leah's blood type and I was told it was as simple as calling our pediatrician. I'm working on finding out her blood type. I also have to call the blood bank (in Hollywood, FL) to find out exactly when the donations should take place. So far the information they gave me at the surgeons says at least 72 hrs. before the surgery but no more than 5 days before. If that is the case that is a very small window of Wednesday and Thursday before the surgery. Also people would have to drive down to Hollywood to donate as they will not be transporting the blood. So much to think about. As soon as I get all the details I will post here in case anyone wants to donate blood for Leah. Even if I am a match they will not allow me since I am within 6 months of having given birth.
He said they would be putting in a drainage catheter. The will be using dissolvable screws. The surgery will last 4-5 hours and that will also be the amount of time she is under anesthesia. Afterward her head will be wrapped in a turban-style bandage and that will be removed a day or 2 later.
My mom went with me this time since Ken was out of town (overnight) on business and was coming home later that day. Dr. Stelnicki's office is right there at the hospital where Leah is having her surgery so I made it a point to take a tour of the hospital. I basically wanted to see where the OR was and the waiting area as well as the pediatric ICU and the pediatric rooms. It definitely helps me mentally and emotionally prepare for surgery day. I can now picture where we will be waiting while she is in surgery, where we will be getting updates by phone and where the surgeons will walk out to say it's finished! I don't know why it helps me, but it does. I will be getting enough new information thrown my way as soon as we arrive and over the time we are there.....the less I have to assimilate that day the better! This way I'll have my bearings.
I met some nice volunteers up in the pediatric ward. An older married couple volunteers in the family lounge/playroom area and they told me we've come to the best place for surgery and how great the hospital and staff are. They said Leah will be in the best of care!
It is hard to believe that in just 17 days we will be heading down there for her surgery. There are many hurdles to cross before that day....the main one which is keeping her healthy. If she gets sick (so much as a runny nose) they will postpone surgery. The minimally-invasive method can only be used on younger infants so if her surgery gets moved she possibly won't be able to have this method.
Pray that Leah stays healthy!!!!!
Saturday, March 22, 2008
These are the two main craniofacial teams that specialize in the exact endoscopic method of surgery that Leah will be having. One of these teams will be performing Leah's surgery. In most endoscopic cranio surgeries the surgeons just go in and release the suture by removing a strip of the skull and then the patient is in the helmet for 12-18 months.
In Leah's surgery they will be "reconstructing" her skull shape while in there and this will give immediate results in the shape of her head and shorten the time in the helmet. This is the traditional "CVR" surgery (cranial vault reconstruction) but done the with an endoscope in a "minimally-invasive" fashion.
We feel so blessed that our pediatrician caught this early enough to qualify for the endoscopic method. If a baby is over 4 months of age they have to perform the traditional method of surgery. In this method they have to make an ear to ear incision and actually remove the skull plates they are working on, reshape them and put them back.
Dr. Heger has been doing this surgery for awhile now and seemed very confident and skilled. We had many questions for him about the surgery. One thing that was a huge source of comfort is that Leah will be operated on by a "craniofacial team" which means that they work together on a regular basis. Her team will consist of her 2 surgeons (Dr. Heger, pediatric neurosurgeon and Dr. Stelnicki, pediatric plastic surgeon), a pediatric anesthesiologist, pediatric nurses etc. Dr. Heger and Dr. Stelnicki have been performing surgery together for 5 years and we have been told that there are many, many benefits to having a craniofacial team! They are like a well-oiled machine and all know what they are doing and what to expect. We are grateful our pediatrician led us to the right surgeons and that Leah will have the benefit of a craniofacial team. Some babies and families have to fly hundreds or thousands of miles away for the right specialists.
Leah's surgery will last 4-5 hours. The first 1.5 hrs are surgery prep...putting her under, etc. Then they will perform the operation which entails making 2 small incisions on each side of her forehead. They will then use an "endoscope" to see what they are doing as they cut or release the fused suture. They will then reshape her skull bones using special tools and will doing a lot of work reconstructing her forehead and eye socket.
The nurse will be making phone calls to us while we are in the waiting room and give as hourly updates. And we will be able to see Leah about 45 minutes after surgery is completed. She will spend the first 24 hrs in the pediatric intensive care unit. They said it is very likely she will need a blood transfusion.
Leah will be in the hospital for 4-5 days after her surgery. We will be staying with her and have free lodging at the "Conine Clubhouse (listed in link section)." She will be on morphine for the first 24 hours post-op and then gradually weaned to tylenol. We are told that there will be substantial swelling after the surgery and her eyes may very well swell shut for a couple days. It is all very scary but we have met very reassuring "cranio" parents online whose babies have already had the surgery and come through fine. We are spending these next 3.5 weeks with equal amounts of anticipation and dread. We dread what they are doing to her but at the same time we are anxious to get to the "other side" of the operation.
Leah will then be fitted with a molding band or helmet that she will have to wear for 23 hours out of everyday. We are told that she will be in this helmet for 3-6 months to help mold her head as it continues to grow. We were blessed to find out that our health insurance will cover the costs of these helmets (about $3,000 each and she would need 2-3 as her head will continue to grow); but only because Leah's condition is associated with a surgery and it is considered part of her treatment. This is a huge blessing since Leah's surgery is going to be a huge out of pocket expense for us! Though we have health insurance we have a very high deductible to meet and then still have to pay the remaining 20% of the surgery, hospital and all related costs. And since we are still paying on the medical bills for her birth the timing couldn't be worse. Prayer in this area would be greatly appreciated!
Despite all the stress we are under right now we are still managing to find JOY in the journey! God has used this situation to bring our family closer than ever before. Things of little importance quickly fade to the background as we cling to what is important in life....our faith, our family and our friends! While Leah's deformity was certainly a surprise to us, we know that nothing is a surprise to God...He knows all and He made her just the way she is. She is in His hands and we trust Him completely!
Friday, March 21, 2008
The suture down the middle of the forehead is called the Metopic suture. When it is fused together the forehead will have a prominent ridge down the middle and the head will look triangular from above. Hers is open.
From the top view you can see how misshapen her head is and the bulge on her forehead. The suture on top of the skull is the saggital. Hers is open but the saggital suture is the most common to be fused.
Her right coronal suture is closed as you can see below.
Her left coronal suture is open as you can see below.
Some babies have multiple sutures that are closed which can cause intra-cranial pressure (ICP) and affect their brain development. It is rare for this to happen in single suture cases but can be a possibility.
When a suture is closed it affects the direction the brain will grow and causes the head to be misshapen or deformed. The sutures are supposed to close at later dates as we get older, some in childhood and some don't even close until adulthood.
We found Leah's scans fascinating and though we wish we weren't in this situation at all, we have found we are quickly becoming experts on craniosynostosis. Surprisingly we have found through meeting other parents online that a lot of pediatricians don't know much about craniosynostosis and many moms have had to push to get referrals to get their baby's head checked out.
Craniosynostosis affects 1 in 2,000 babies and though that seems rare to me I have found through the online community that it is quite common. The only way to "fix" cranio is through surgery. Unless it is a type of cranio that is associated with a syndrome (Leah's is not), craniosynostosis happens sporadically with no known cause and is not genetic.
Will post soon about Leah's upcoming surgery and her visit with the neurosurgeon on March 10th.
Thursday, March 20, 2008
Leah's first time at the beach last week...she is 7 weeks 6 days.
Saturday, March 15, 2008
This also caused her left eye socket to be smaller than her right and her nose is slightly crooked. Though her deformity is noticeable in this photo taken at 7 wks 4 days, cranio is especially noticeable from a bird's eye view.
For more information on craniosynostosis click here
In the upcoming posts I will be sharing about Leah's 3D cat scan as well as photos from it, information about Leah's upcoming surgery, recent pictures of Leah and other updates. We hope you'll continue to visit Leah's blog!
Thursday, March 13, 2008
Even though the pediatrician had already told us the radiologist report said "craniosynostosis" it wasn't an official diagnosis until we saw a plastic surgeon or neurosurgeon with the x-rays. I researched during the 10 day wait and learned all about craniosynostosis as well as plagiocephaly (which is a misshapen head that can be fixed without surgery) hoping that would be our diagnosis. Of course many things I saw and read online confirmed it would be cranio. I saw pictures of other babies that looked exactly like Leah. Basically by the time we went to see Dr. Stelnicki I had already figured out which suture had fused.
After the initial shock that Leah may need surgery wore off, we tried to live life as normally as possible during our 10 day wait. We knew that if surgery were part of God's plan He would sustain us through this time and that He would take care of Leah!
Ken and I drove down to the appt. on Valentine's Day with Leah while my mom stayed home with our older girls. We were calm and enjoyed our time together. The whole drive down we discussed the situation and hoped we would get a diagnosis that would not require surgery. As soon as Dr. Stelnicki walked in he could tell with 100% certainty that Leah had coronal craniosynostosis. He did have x-rays to confirm and he looked at them, but he was able to tell just by looking at her. The first words out of my mouth were, "Oh no, I was hoping it was plagio." His eyes were warm and kind as he gently said no. Though we were expecting that diagnosis it was still a bit of a surprise. All the research had prepared me and I was thankful for that, but nothing can really prepare you to hear your infant is going to need surgery on her skull!
He said her case was moderate to severe and told us we had 2 options but both entailed surgery. I had already read about both surgeries online but was not sure if the "minimally-invasive endoscopic" method would be available to us. They have to be under 4 months of age at the time of surgery (which Leah will be), but we were not sure which sutures could be fixed this way. Dr. Stelnicki spent a lot of time with us and never made us feel he was in a hurry. He answered all of our questions in a calm and reassuring manner. Even though this diagnosis was huge and scary to us, it was everyday "work" to him.
He told us that we didn't need to decide that day but if we were leaning toward the "endoscopic" method that we would want to walk out with a surgery date since time was of the essence. Leah was 4 wks old at the time of this appt. and she would need the surgery before 4 months if we went this route. He said we could always change it later. He was very thorough and sent us to get all our information and appts. scheduled with his surgery assistant. We were very impressed with us office as they were very organized and tried to take all the other stresses off the parent.
Ken and I walked out with a surgery date of April 14. Our friends and family had been praying for us that day and I know it helped tremendously. We were able to remain calm and strong, ask the right questions and remember the visit with clarity later.
In my next post I'll explain craniosynostosis in detail.
Wednesday, March 12, 2008
It was at Leah's 2 week well visit that our pediatrician noticed a slight bulge on the top left hand side of Leah's forehead. I had just noticed it a day or so before but thought nothing of it. Leah had been born with some swelling on her left side of her forehead with her left eye swollen shut.
Our pediatrician sent us to get x-rays. I was surprised....x-rays? He downplayed it saying just to be on the safe side. My oldest daughter was there and she got really concerned. I calmed her down saying that Leah was fine and that we were just getting things checked out. Since the imaging office was across the street and we didn't need an appt I went ahead and took her right over for the x-rays. I figured I wanted to know as soon as possible.
Leah did well while they took her x-rays. The women were surprised at how still she laid and didn't cry. They expressed what a sweet baby she was. I left there feeling good that we'd gotten it out of the way, starting to worry a bit but trying to think positively. I called Ken to let him know. He was out of town on business that day.
Our pediatrician called at 5:30 that evening saying that something was showing up and we'd need to take her to see a specialist....a neurosurgeon! He told me not to let that freak me out and gave me the name of a specialist that was covered under our insurance. He could tell I was worried and reassured me that it was best to get things checked out and he was doing what he would want done if it were his daughter. We later found out that this was our "craniofacial" doctor or plastic surgeon. This was the first time I'd heard the term "craniosynostosis." I had him spell it for me as I knew I would be googling it as soon as we hung up. This all happened on Monday February 4th....what should have been a normal 2 week well baby visit turned into the shock of my life!