I have chosen to write this blog for many different reasons:
1- (Prob the most important) I need a way to vent (my emotions). Do I need to write it out so that that everyone can see how I feel...of course not (but it leads me to my second reason)...
2-While I have been going through the process of dealing with this I have been reading other mom's blogs about their children going through this same type of surgery. I found so much comfort in reading how the moms were feeling, how the actual surgery was, and how the recovery was. I am hoping if others read my blog (if their child ever has to go through this) then they may have comfort as well...if only I comfort one mom I feel that this blog has done its job!
3- I want to keep friends/family posted on how things are going
Please remember this is a MOTHER'S blog. Although there are some times I say "we", "us", etc I use that because I know that Heikki feels the same way. There are times when I say, I... blah, blah, blah...this isnt to say Heikki doesnt feel the same way...but this is MY journal!! ;) Does that make any sense....haha...maybe not! Oh well! It does to me! ;)
The nightmare all began when I took Hanna to her 4 month appointment. I was so anxious and excited to tell the Dr that she was rolling, eating, and sleeping through the night and all those wonderful things that all 4 mnth olds do!
My smile changed to a fearful frown when I heard, "Are you concerned with Hanna's head shape?" My reply was, "No, are you??" My fearful frown turned into tears when I heard, "Yes, I am a little concerned and you will need to see a specialist." (ok, it was probably nicer than that...). She assured me that more than likely it was nothing and at the most she would probably have to wear a helmet! A helmet!! Why?? I just didn't see it! I had always been so aware of how the girls look. If there was a new freckle, I saw it...a new bruise from falling..I saw it...a hair misplace..I saw it...I didn't see this!!She quickly mentioned surgery, however, I threw that idea out the window very quickly...my little girl was not going to have her skull reshaped..no way!
When I took Hanna home I started looking at pictures from when she was born to the present. Well...maybe there was a little something different! Surely we will get scans done and they will say its nothing and that we just need to keep Hanna off of her head a certain way. Right??.....
A few days after the scan of Hanna's head I received a phone call from a nurse at my Dr's office. All I can remember her saying is that Hanna's metopic suture is completely closed and that we would need to go see a neurosurgeon and basically to prepare ourselves for our little girl to have surgery. She told me a few things, I wrote a few things. Then I hung up. What?? Did I hear this right?? But what about a helmet?? What about therapy..I hear there was new therapy...works wonders?? We will hold her head up at night so that she doesn't roll on it! Just anything...anything...just not surgery!
Weeks dragged on...are are still dragging on. Waiting...waiting...and waiting for this dreadful day that no parent wishes that their child has to go through! Of course, we would do anything if we could be the ones going through this...but I just dont think that is an option...(Maybe I should ask the Dr that on Tues).
So since that dreaded phone call...we have been through some ups and downs. First we had to decide where we were going to get the surgery done. We sent the images to Dallas Medical City to have a craniospecialist look at the images. We were so excited to hear him say, "I just dont think she is going to need surgery at this time".
We decided to head down to Scott and White after talking to my best friend and her husband. They are doctors/ surgeon at Scott and White and they know a plastic surgeon that specializes in what Hanna has. So it was nice to be able to get Hanna quickly in to see Dr. C. After visiting with the Dr. he informed us that by looking at just scans you wouldnt think she would need it, but by seeing her in person this will benefit her the most. Due to Hanna's case being extremely hard (meaning that it is not very severe) Dr. C talked with 3 other craniospecialist. One being that of the Dr. in Medical Cityh that said we would not need surgery. After the talk, he also agreed that she would most benefit from surgery. So...surgery it is.
While sitting in the office listening to Dr. C go over some things about this condition and what will take place to fix it, I fought extremely hard to fight back my tears. I had one question..."What caused this...could I have done something differently during pregnancy?" When he answered there are no real answers to this but slight possibility of you being on seizure medication during pregnancy". This is when I lost it and was unable to fight the tears. Although there is no hard evidence of this (and it is a slight possibility that this is what caused it) this is all I needed to hear to blame myself! Once I was calmed down by my best friend and Dr. C., I was able to focus once again on what was being said. Although I try not to blame myself for what Hanna is about to go through, only one can imagine that this may enter my thoughts every once in awhile.
The next day Hanna and I jumped in the car and headed back home. It did take quite a bit longer this time...I just was zoning more, I wasnt in such a hurry to be somewhere, things just didnt seem that important any more! I had to stop the car a few times to get composure and remember that I need to be strong for my little one! No pitty parties!!
On my drive home I found something positive from this horrible bump/detour...whatever you may call it.. in our lives....if I have to say something good that has come out of this it has brought me closer to God! You know...you have those moments in life that you have to look for something stronger because you just dont know how you are going to make it! YHou dont know how you are going to be the one to have to make a decision..as hard as this is going to be....so what do you do?? You hand it over to God!! This is when a very good friend sent me a text....and it will stick in my mind till the day I die...
(If He brings it to you, He will bring you through it) LOVE THIS and Thank you Meggan for sharing this with me!
Of course you dont have to go to church and you dont have to listen to Christian music to make God listen to you and to help guide you but that is what helps me. Going to church and hearing the music and message just helps me connect with God just a bit more. When you get into my car you will hear christian music....it just makes me feel good and what great music for the girls to grow up listening to!!
For days and weeks..I kept praying...Please if she doesnt have to go through this surgery I will come to church every Sat, every Sunday, every day...just answer this prayer! Even though this prayer has not been answered (and God has a reason...I do BElieve) I am closer to Him. I feel so much stronger in my faith now..and I had been looking for it for some time...so this is a GOOD thing...and I thank Him for this!
1- (Prob the most important) I need a way to vent (my emotions). Do I need to write it out so that that everyone can see how I feel...of course not (but it leads me to my second reason)...
2-While I have been going through the process of dealing with this I have been reading other mom's blogs about their children going through this same type of surgery. I found so much comfort in reading how the moms were feeling, how the actual surgery was, and how the recovery was. I am hoping if others read my blog (if their child ever has to go through this) then they may have comfort as well...if only I comfort one mom I feel that this blog has done its job!
3- I want to keep friends/family posted on how things are going
Please remember this is a MOTHER'S blog. Although there are some times I say "we", "us", etc I use that because I know that Heikki feels the same way. There are times when I say, I... blah, blah, blah...this isnt to say Heikki doesnt feel the same way...but this is MY journal!! ;) Does that make any sense....haha...maybe not! Oh well! It does to me! ;)
4 Month Appt
The nightmare all began when I took Hanna to her 4 month appointment. I was so anxious and excited to tell the Dr that she was rolling, eating, and sleeping through the night and all those wonderful things that all 4 mnth olds do!
My smile changed to a fearful frown when I heard, "Are you concerned with Hanna's head shape?" My reply was, "No, are you??" My fearful frown turned into tears when I heard, "Yes, I am a little concerned and you will need to see a specialist." (ok, it was probably nicer than that...). She assured me that more than likely it was nothing and at the most she would probably have to wear a helmet! A helmet!! Why?? I just didn't see it! I had always been so aware of how the girls look. If there was a new freckle, I saw it...a new bruise from falling..I saw it...a hair misplace..I saw it...I didn't see this!!She quickly mentioned surgery, however, I threw that idea out the window very quickly...my little girl was not going to have her skull reshaped..no way!
When I took Hanna home I started looking at pictures from when she was born to the present. Well...maybe there was a little something different! Surely we will get scans done and they will say its nothing and that we just need to keep Hanna off of her head a certain way. Right??.....
The Phone Call
A few days after the scan of Hanna's head I received a phone call from a nurse at my Dr's office. All I can remember her saying is that Hanna's metopic suture is completely closed and that we would need to go see a neurosurgeon and basically to prepare ourselves for our little girl to have surgery. She told me a few things, I wrote a few things. Then I hung up. What?? Did I hear this right?? But what about a helmet?? What about therapy..I hear there was new therapy...works wonders?? We will hold her head up at night so that she doesn't roll on it! Just anything...anything...just not surgery!
Weeks dragged on...are are still dragging on. Waiting...waiting...and waiting for this dreadful day that no parent wishes that their child has to go through! Of course, we would do anything if we could be the ones going through this...but I just dont think that is an option...(Maybe I should ask the Dr that on Tues).
So since that dreaded phone call...we have been through some ups and downs. First we had to decide where we were going to get the surgery done. We sent the images to Dallas Medical City to have a craniospecialist look at the images. We were so excited to hear him say, "I just dont think she is going to need surgery at this time".
We decided to head down to Scott and White after talking to my best friend and her husband. They are doctors/ surgeon at Scott and White and they know a plastic surgeon that specializes in what Hanna has. So it was nice to be able to get Hanna quickly in to see Dr. C. After visiting with the Dr. he informed us that by looking at just scans you wouldnt think she would need it, but by seeing her in person this will benefit her the most. Due to Hanna's case being extremely hard (meaning that it is not very severe) Dr. C talked with 3 other craniospecialist. One being that of the Dr. in Medical Cityh that said we would not need surgery. After the talk, he also agreed that she would most benefit from surgery. So...surgery it is.
While sitting in the office listening to Dr. C go over some things about this condition and what will take place to fix it, I fought extremely hard to fight back my tears. I had one question..."What caused this...could I have done something differently during pregnancy?" When he answered there are no real answers to this but slight possibility of you being on seizure medication during pregnancy". This is when I lost it and was unable to fight the tears. Although there is no hard evidence of this (and it is a slight possibility that this is what caused it) this is all I needed to hear to blame myself! Once I was calmed down by my best friend and Dr. C., I was able to focus once again on what was being said. Although I try not to blame myself for what Hanna is about to go through, only one can imagine that this may enter my thoughts every once in awhile.
The Drive Home
The next day Hanna and I jumped in the car and headed back home. It did take quite a bit longer this time...I just was zoning more, I wasnt in such a hurry to be somewhere, things just didnt seem that important any more! I had to stop the car a few times to get composure and remember that I need to be strong for my little one! No pitty parties!!
On my drive home I found something positive from this horrible bump/detour...whatever you may call it.. in our lives....if I have to say something good that has come out of this it has brought me closer to God! You know...you have those moments in life that you have to look for something stronger because you just dont know how you are going to make it! YHou dont know how you are going to be the one to have to make a decision..as hard as this is going to be....so what do you do?? You hand it over to God!! This is when a very good friend sent me a text....and it will stick in my mind till the day I die...
(If He brings it to you, He will bring you through it) LOVE THIS and Thank you Meggan for sharing this with me!
Of course you dont have to go to church and you dont have to listen to Christian music to make God listen to you and to help guide you but that is what helps me. Going to church and hearing the music and message just helps me connect with God just a bit more. When you get into my car you will hear christian music....it just makes me feel good and what great music for the girls to grow up listening to!!
For days and weeks..I kept praying...Please if she doesnt have to go through this surgery I will come to church every Sat, every Sunday, every day...just answer this prayer! Even though this prayer has not been answered (and God has a reason...I do BElieve) I am closer to Him. I feel so much stronger in my faith now..and I had been looking for it for some time...so this is a GOOD thing...and I thank Him for this!
Where We are Now
Aug 27
So now we are basically playing the waiting game. Yes, surgery is going to happen...Sept 30. We know this..I have NEVER EVER had time move so slowly...Just let the day be here already!!
After hearing from 2 drs that they just dont think she needs it and getting our hopes up so fast and then come crashing down when Dr. C calls and assures us that this is the right thing...it is draining! Absolutely draining! Emotions are running crazy...some days my heart feels so good that we are doing this (we are going to better her life and she will appreciate what we are going to do for her) then other days my heart just cries and cries! Maybe not on the outside, but in the inside I just need to know that we are doing the right thing!
This is my prayer now...and for all of you out there that are praying for our little girl please pray that by surgery day Heikki and I go into this surgery feeling 100% certain that we are doing what is best for our daughter! Please pray that there is not a question about whether or not we do it. Please pray that Dr. C and the neurosurgeon are so skilled and so unbelievably awesome that Hanna is in the best hands EVER!!! Those are my prayers!!
Tues. Aug 30th we will be visiting with Dr. C once again. Yes, I would love for him to look at her and say WOW...she has made huge changes and we need to re-image and we just need to watch her close or she needs to wear a helmet...but the possibility of that happening is so very slim! So I need to get that out of my head! He will be going over the procedure and questions we may have. On Sept 6, Hanna will begin her injections so that she can go into this surgery as strong as she possibly can! Each week we will have to go 2 times to the Dr. Once time for blood work and the next for injections (this will take place here at her pediatricians).
Few things I am SO grateful for:
1- For all the love and suypport that we are receiving from friends and family.
2- For the medical expertise that we are receiving..this is a very rare thing..thank goodness we have facilities so close to us. Not to mention my Dr. Assistant even seeing this...it is such a slight thing that again some drs dont even think it needs to happen. (Let me explain that a little more...the drs that dont think it needs to happen are not the specialist!...my Dr has never seen this on a patient that is how rare it is).
3-For my best friend and husband to welcome us with open arms and to come with me to all of Hanna's appts. (You do not have a clue of what that means to me!)
4-For Heikki's unbelievable insurance...due to his insurance, we are not paying for a penny. The medication alone pre-op is $1700 a week.
We will get through this....We will be strong. It will be the hardest thing we have ever (and hopefully never again) go through...but it will make us a stonger family in the long run!
So now we are basically playing the waiting game. Yes, surgery is going to happen...Sept 30. We know this..I have NEVER EVER had time move so slowly...Just let the day be here already!!
After hearing from 2 drs that they just dont think she needs it and getting our hopes up so fast and then come crashing down when Dr. C calls and assures us that this is the right thing...it is draining! Absolutely draining! Emotions are running crazy...some days my heart feels so good that we are doing this (we are going to better her life and she will appreciate what we are going to do for her) then other days my heart just cries and cries! Maybe not on the outside, but in the inside I just need to know that we are doing the right thing!
This is my prayer now...and for all of you out there that are praying for our little girl please pray that by surgery day Heikki and I go into this surgery feeling 100% certain that we are doing what is best for our daughter! Please pray that there is not a question about whether or not we do it. Please pray that Dr. C and the neurosurgeon are so skilled and so unbelievably awesome that Hanna is in the best hands EVER!!! Those are my prayers!!
Tues. Aug 30th we will be visiting with Dr. C once again. Yes, I would love for him to look at her and say WOW...she has made huge changes and we need to re-image and we just need to watch her close or she needs to wear a helmet...but the possibility of that happening is so very slim! So I need to get that out of my head! He will be going over the procedure and questions we may have. On Sept 6, Hanna will begin her injections so that she can go into this surgery as strong as she possibly can! Each week we will have to go 2 times to the Dr. Once time for blood work and the next for injections (this will take place here at her pediatricians).
Few things I am SO grateful for:
1- For all the love and suypport that we are receiving from friends and family.
2- For the medical expertise that we are receiving..this is a very rare thing..thank goodness we have facilities so close to us. Not to mention my Dr. Assistant even seeing this...it is such a slight thing that again some drs dont even think it needs to happen. (Let me explain that a little more...the drs that dont think it needs to happen are not the specialist!...my Dr has never seen this on a patient that is how rare it is).
3-For my best friend and husband to welcome us with open arms and to come with me to all of Hanna's appts. (You do not have a clue of what that means to me!)
4-For Heikki's unbelievable insurance...due to his insurance, we are not paying for a penny. The medication alone pre-op is $1700 a week.
We will get through this....We will be strong. It will be the hardest thing we have ever (and hopefully never again) go through...but it will make us a stonger family in the long run!
Hanna's next update will be after our appt with Dr C next week....
Until then all prayers are so wanted and appreciated!! ;)
