Friday, March 16, 2012
The first 48 hours
This casting thing is a little harder than I thought it would be. I honestly thought it would only really be inconvenient for me...yeah a little selfish I know. The little man has been having a really hard time adjusting to the cast. The first 5 or 6 hours he was good but once he realized it does not come off, he started screaming. That night he slept for 30 min then screamed for 30 mins...all night. The morning I dug out the infant Tylenol I was given at my shower (thank you Tim and Sarah!) and started giving him half the dose he should get. After trying all day...and failing...I went up to the full recommend dose. That stuff is magic! He slept from 8:50pm to 3:44 straight! We are still trying to figure everything out but I think he is finally getting used to the cast. The good side of all of this is that I sewed him some super cute baby leggings to protect his bare leg! I love my sewing machine!
Wednesday, March 14, 2012
Sad day
Ok I am probably just being dramatic but my little one had to be casted today. We got X-rays done 2 months ago and his leg was at a 45 degree bow. The X-rays today show the same. His body is not correcting it quick enough. The cast will help his leg grow straighter from now on...hopefully. The doctor wants to do 4-6 casts that are changed every 2 weeks. Hopefully he will get used to this extra baggage for the next few months. If this doesn't work he will have to have a surgery where they break his leg and reset it straight.
I'm trying hard not to stress but the cast makes everything real. For the past 3 months I've had a completely normal little boy. The only thing abnormal about him is that he is toooo damn cute!!! At least that's what the average onlooker sees. Now with this cast it's a neon light shining "look what's wrong with me!". Not just to everyone else but to me. It was so easy to ignore until we hit this point.
The positive idea I have to keep repeating in my head is that once his leg is fixed, by cast or by surgery, his leg will be completely corrected. He won't walk funny, he will be able to do any sport he wants to do, and he won't have a neon sign shining "look what's wrong with me.". I love my little man so much. I hate the idea of anyone seeing him as less than amazing.
I'm trying hard not to stress but the cast makes everything real. For the past 3 months I've had a completely normal little boy. The only thing abnormal about him is that he is toooo damn cute!!! At least that's what the average onlooker sees. Now with this cast it's a neon light shining "look what's wrong with me!". Not just to everyone else but to me. It was so easy to ignore until we hit this point.
The positive idea I have to keep repeating in my head is that once his leg is fixed, by cast or by surgery, his leg will be completely corrected. He won't walk funny, he will be able to do any sport he wants to do, and he won't have a neon sign shining "look what's wrong with me.". I love my little man so much. I hate the idea of anyone seeing him as less than amazing.
Wednesday, February 1, 2012
Update
Ok I have been neglecting the blog. Being a new mom is amazing and stressful all at the same time. So here is the dish on Nolan's latest treatment.
On Jan 5th my husband and I started the trek to LA. While driving up I called Aetna to get his insurance number and tell told me I wasn't covered. I began frantically calling my hr department to get everything figured out and we found that when I called to add Nolan on to my insurance my open enrollment info was changed back to kaiser. My hr told me they would get everything straightened out in a few weeks. I took the opportunity to tell them I wanted to stay with Kaiser. It felt like one of those moments where it was meant to be. Now we are back with Dr. Shoemaker.
A few weeks ago I went to our 3rd appointment with Dr. Shoemaker. He was very upfront and honest with me which I appreciated. He explained to me that casting is the preferred treatment option but there has been no studies to show casting will improve his condition. He also told me that movement is important for proper growth and development. The other option is the stretching exercises we have been doing since has was a few weeks old. The decision was to take baseline X-rays, continue stretching exercises, and take X-rays again in 2 months. Currently the bow of his leg is at a 40 degree curve. As long at it is corrected to 35 degrees or less in 2 months then Dr. Shoemaker is ok to continue with just stretching. In the meantime we are stretching and hoping we do not have to do serial casting!
On Jan 5th my husband and I started the trek to LA. While driving up I called Aetna to get his insurance number and tell told me I wasn't covered. I began frantically calling my hr department to get everything figured out and we found that when I called to add Nolan on to my insurance my open enrollment info was changed back to kaiser. My hr told me they would get everything straightened out in a few weeks. I took the opportunity to tell them I wanted to stay with Kaiser. It felt like one of those moments where it was meant to be. Now we are back with Dr. Shoemaker.
A few weeks ago I went to our 3rd appointment with Dr. Shoemaker. He was very upfront and honest with me which I appreciated. He explained to me that casting is the preferred treatment option but there has been no studies to show casting will improve his condition. He also told me that movement is important for proper growth and development. The other option is the stretching exercises we have been doing since has was a few weeks old. The decision was to take baseline X-rays, continue stretching exercises, and take X-rays again in 2 months. Currently the bow of his leg is at a 40 degree curve. As long at it is corrected to 35 degrees or less in 2 months then Dr. Shoemaker is ok to continue with just stretching. In the meantime we are stretching and hoping we do not have to do serial casting!
Tuesday, December 13, 2011
Doc visit #1
For the first time during the journey I feel like I have made a mistake. On thursday Cameron and I went to see Dr. Shoemaker to get his evaluation of Nolan's leg. He confirmed what Dr. Zionts told me a few weeks ago. He has a bowed tibia. Even though I felt extremely uncomfortable with Dr. Shoemaker treating a clubfoot case; I felt very at ease with him examining Nolan and going over what general treatment would be. I really regret changing my insurance now. He would have been a fabulous doctor. Now I am having second thoughts about seeing Dr. Zionts. He has been AMAZING to my husband and I throughout this whole mess but I no longer feel it is necessary to drive 6 hours round trip. Clubfoot treatment is such a precise art and I was willing to travel to find the right doctor. Now that his prognosis is not as delicate, I want to explore what our options are here in San Diego. At least I took the time to research every pediatric orthopedist in the Southern California area before Nolan was born. Finding a pediatrician seems daunting enough now! The standout option is Dr. Pring at Rady's. She specializes in limb lengthening, shortening, and straightening. I think the plan as of now is to make an appointment with Dr. Zionts and with Dr. Pring and make our decision after we have seen both doctors. I feel bad changing doctors after everything Dr. Zionts and his team has done for us but I need to think of what is best for my own sanity. Dealing with a newborn is hard enough right now. I don't need to make my life harder if there is a doctor here in San Diego who can treat my son.
Saturday, December 3, 2011
Nolan is here!!
Nolan Parker Westfall arrived on 11/27 at 3:41 am. He was 6 lbs 13 oz at birth and was 18 inches long. He is healthy, strong, and absolutely perfect (except for his little left leg of course.) He was born after only 5 hours of labor and I was able to have him completely naturally! Recovery for me has been pretty quick. I came home from the hospital within 24 hours and I've been out and about since day 3. In fact Cameron and I took him out to San Diego's big Christmas festival at Balboa Park today and he was a champ! He is super chill and nurses well pretty much anywhere.
Now for the not so great news...he doesn't have clubfoot. I honestly don't know if what he has is worse or better...but it is definitely different. At the hospital the Kaiser orthopedist said it was still clubfoot even though the deformity looks much different. I was extremely skeptical and sent a pic to Dr. Zionts once we got home. He called me within the hour and said I was right, it isn't clubfoot at all. We have yet to get an official diagnosis but what Dr. Zionts believes we are dealing with is tibial bowing. His curved foot supposedly will straighten on its own but there is a good chance we will have to have a surgery to correct a leg length discrepancy later in life. We are still planning on seeing Dr. Zionts in LA since he is the only person so far to give us real answers. I was so impressed that he called so quickly and took the time to look over the pictures. I'm not even officially his patient yet and he has been more caring, compassionate, and helpful than any of the doctors I have seen. Don't get me wrong, Kaiser has been amazing for my prenatal care and my birth. I just don't trust their orthopedists. However, I do have an appointment scheduled with Dr. Shoemaker to get his opinion on Thursday. I know it will do little good in the long run but I feel kinda weird not using the resources that are currently available to me. More info to come on Thursday!
Now for the not so great news...he doesn't have clubfoot. I honestly don't know if what he has is worse or better...but it is definitely different. At the hospital the Kaiser orthopedist said it was still clubfoot even though the deformity looks much different. I was extremely skeptical and sent a pic to Dr. Zionts once we got home. He called me within the hour and said I was right, it isn't clubfoot at all. We have yet to get an official diagnosis but what Dr. Zionts believes we are dealing with is tibial bowing. His curved foot supposedly will straighten on its own but there is a good chance we will have to have a surgery to correct a leg length discrepancy later in life. We are still planning on seeing Dr. Zionts in LA since he is the only person so far to give us real answers. I was so impressed that he called so quickly and took the time to look over the pictures. I'm not even officially his patient yet and he has been more caring, compassionate, and helpful than any of the doctors I have seen. Don't get me wrong, Kaiser has been amazing for my prenatal care and my birth. I just don't trust their orthopedists. However, I do have an appointment scheduled with Dr. Shoemaker to get his opinion on Thursday. I know it will do little good in the long run but I feel kinda weird not using the resources that are currently available to me. More info to come on Thursday!
Thursday, November 17, 2011
The Waiting Game
Only 2 weeks left before my due date!!!! At least he has cooperated so far staying in. I feel like each day is an accomplishment.
I had my last detailed ultrasound scan on 11/8. I have yet to have an ultrasound that I am not terrified about. The tech spent at least 20 minutes looking at his heart. I thought we were concerned about his leg?!?!?! Every time they spend a little longer on one area than another my husband and I start to sweat. The OB assured us that it is just protocol they do a detailed scan of the heart whenever there is a birth defect. Once they finally got to his leg they were able to measure that his LLD remains consistent at about 1 cm. I'm not a doctor but if he had damage to a growth plate you would think that the LLD would continue to get greater each scan. I'm not complaining. I'm ecstatic that the LLD is not getting worse, but I'm so confused on what is causing it and what it means. The kaiser orthopedist refuses to talk about LLD issues with me until he is born and I can't see the orthopedist I am planning on getting treatment from until Jan 1st due to insurance. Yet again...I am just playing the waiting game.
As for his treatment, we are waiting for answers as well. I sent an email to the orthopedic hospital in LA a little over a week ago. I received an email back that day from director of operations and said she is looking into the answers for my questions. She also told me I would get a call by the end of last week. I know that I am just being anxious but I am dying to get his treatment set up and ready to go. I have faith that everything will work out but having one last thing on my list would be nice.
I had my last detailed ultrasound scan on 11/8. I have yet to have an ultrasound that I am not terrified about. The tech spent at least 20 minutes looking at his heart. I thought we were concerned about his leg?!?!?! Every time they spend a little longer on one area than another my husband and I start to sweat. The OB assured us that it is just protocol they do a detailed scan of the heart whenever there is a birth defect. Once they finally got to his leg they were able to measure that his LLD remains consistent at about 1 cm. I'm not a doctor but if he had damage to a growth plate you would think that the LLD would continue to get greater each scan. I'm not complaining. I'm ecstatic that the LLD is not getting worse, but I'm so confused on what is causing it and what it means. The kaiser orthopedist refuses to talk about LLD issues with me until he is born and I can't see the orthopedist I am planning on getting treatment from until Jan 1st due to insurance. Yet again...I am just playing the waiting game.
As for his treatment, we are waiting for answers as well. I sent an email to the orthopedic hospital in LA a little over a week ago. I received an email back that day from director of operations and said she is looking into the answers for my questions. She also told me I would get a call by the end of last week. I know that I am just being anxious but I am dying to get his treatment set up and ready to go. I have faith that everything will work out but having one last thing on my list would be nice.
Friday, November 4, 2011
Time to relax
I am now officially on maternity leave!!!! It was very bittersweet leaving work but I am so happy to be able to rest and relax. Of course now that work is done that means the doctor appointments have hit an all time high. I had a mid-wife appointment yesterday and she wanted to do an ultrasound when I was there. I was very reluctant since I have yet to have a good experience with the whole process. This time was very refreshing though! All she wanted to do was check his position. She looked at his head, heart rate, and then lingered a bit on his face to capture him sucking his thumb and swallowing some amniotic fluid. It was so nice to see him as a "normal" baby for once. She stayed far away from his foot or leg and just gushed on how cute, strong, and healthy he looked. What a relief to not hear the word "defect" or "wrong" during an appointment...I'll leave those words for my hospital high resolution ultrasound on Tuesday.
Another bonus about the ultrasound is that she confirmed I have lots of fluid and he has lots of room to grow still. Most women wouldn't be thrilled on keeping a baby full or past term but the kid and I have been having daily pep talks on how he needs to stay in. I have an entire timeline set up with my insurance options that revolve around him being on time or even better, a little late. Let's just hope he doesn't get rebellious!
Another bonus about the ultrasound is that she confirmed I have lots of fluid and he has lots of room to grow still. Most women wouldn't be thrilled on keeping a baby full or past term but the kid and I have been having daily pep talks on how he needs to stay in. I have an entire timeline set up with my insurance options that revolve around him being on time or even better, a little late. Let's just hope he doesn't get rebellious!
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