So yesterday I was at church. Listening to music, listening to the sermon and the prayers. This time it was different. This time it hit me a bit more. This sermon was geared for those superficial christians. I started asking myself questions...am I being superficial with my christianity? Do I like going to church just to listen to music or to have a moment of peace? Dont get me wrong, I have been feeling more christ like, but I still kept asking myself is this because of Hanna? Or am I becoming a changed christian as I feel as I am. (**Dont get me wrong, I have always been a christian...just not to the point where I want to be). The honest answer was...I just dont know. But at the end of the service (and I am so glad that Mya's biting incident happened after his strongest point...that's a WHOLE new story), the pastor helped me find out that answer by praying for the congregation...This was the prayer...God, help me become more of a REAL follower and not a superficial follower. Help me understand that you are REAL and live within me by showing me some time this week...some time, some where.....
I prayed this prayer so many times yesterday. I prayed as soon as we got in the car (After the long talk with our little biter), I prayed this on my evening run, I prayed this after watching the beautiful opening ceremony of the Cowboys game, I prayed this before I went to bed! I just kept wondering how in the world is he going to show me.
God is REAL, God is WITHIN me, God is AWESOME
This morning (Monday morning...the day after this repeated prayer) I received a phone call from Dr. Marcin. He started off by saying, Im so sorry that I am going to have to put you back on this emotional rollercoaster. He told me that when he saw Hanna the last time he didnt want to put too much false hope into my head so he refrained from telling me. But after talking and visiting with 3 other specialists they have all agreed that Hanna is a Miracle baby (ok, those are my words) and would not need to have this surgery after all. (In 6 months we will revisit). And although we will revisit in 6 months (with the possibility of surgery), Dr. Marcin does not forsee that happening! Her head has changed shape, but not to the degree of change that he would expect to see from a child that really truley needs this surgery! Now how do you like that for a quick response from God!!
I can not tell you in words how excited I am!!! I started crying on the phone (due to all the excitement I was feeling). Dr. Marcin sat in silence until I got my composure. After I got control he explained to me he feels like Hanna as his own and feels so sorry that this answer is so hard. He explained to me (as he has in the past) that he has a 18 mo old daughter and he feels for me!
So this is where we are now...and I like it here!!!
Love to all!!
**Now, even though this blog wont be continued or even helpful for those mothers needing support...maybe just maybe superficial christians that want to believe more can have a story that will help guide them!!
Monday, September 12, 2011
Thursday, September 1, 2011
Prayers Answered!
So this past Tues Hanna had her pre-op appt with Dr. Czewinki (aka: Dr. C)...easier to say! ;) Lately what has really been bothering me is that I just didn't feel 100% confident with what decision we were making. Like I have said before, there have been a few drs that have asked, "Are you sure you should be doing this, she just doesnt look that bad?" Dr. C has always said, of course this is your decision but through his experience as well as 3 other well known craniologists said they feel that this is the right decision. But I kept asking myself: Just how bad is this?? In my eyes its just not that bad (or is that because I am her mother and in my eyes she is perfect!) Then I would ask myself: what if we dont do it? And this is a question I have asked the Drs several times. The answer is, I dont know. It will for sure get worse, but how much worse I can't tell you that. Supposedly the suture that has closed can close anywhere from 1 year to 8 years of age. So if her suture was "supposed" to close at 5 years old, then the condition could get a lot worse because it has a lot more growing to do. (If any of this sounds confusing, thats ok...because it is confusing to me too!) So we just dont know what could happen a few years down the road. They are also not certain on what it would do to her intellectually if we don't get this fixed, but as Dr. C always says, only one can imagine if your brain is being squeezed in one area. So because I had so many questions going into this appointment, I just prayed and prayed (all the way to Temple) that I would leave this appointment feeling 100% confident that we were doing the right thing! I also prayed, please don't let me question myself anymore on whether or not we should do this... (due to the fact that I need to prepare myself for what Hanna is about to go through). I am so happy to say that my prayers were answered! I am 100% confident that we are doing the right thing, and I have never let those questions enter my head since leaving that appointment. And I feel GREAT that we are doing this to better Hanna's life.
While we were in the appointment Dr. C went over all the questions that I had and talked about each one thoroughly. What I love about this doctor is that he does not make me feel stupid, as stupid as the question may be! He asked me if I wanted to see pictures of an actual surgery. I said yes, I needed to see it. If my daughter can actually go through it, then I need to be able to be strong enough to look at pictures. It was pretty gruesome and I will not go into details buut what I can say about this procedure is I am AMAZED at the stuff that doctors can do these days!
Dr. C also told me about what I can expect. I do plan on posting pictures of what Hanna looks like after surgery. We have planned on Hanna being in the hospital for about 3 days. Intensive care for 1 or 2 days, depending on her blood level, and then 1 or 2 days on the regular floor. The Dr. has warned me that her eyes will be swollen shut for 4-5 days and her head will be extremely swollen. So these two things are freaking me out a bit right now. Supposedly after her eyes begin to open then she will start to act like the little girl we all know. She may be a little more clingy at first...(how awesome is that...I just get to hug on her more!) I asked how much pain she should be in and the Dr told me that in his older patients that go through this they say there isn't so much pain (surprisingly enough), the part that is so hard on the patients is the swelling of head and eyes.
The part that made me feel as though we are doing the right thing is when I saw Hanna's pictures. These pictures are from the first meeting and pictures from about 4 weeks ago. After looking at the pictures I see HUGE changes, and not positive changes. So, right at that time I said, yes, we are doing the right thing.
After Dr. C went through all the "possible complications"...no need to mention...I signed consents and off I went!
More than likely after surgery I will stay in Temple until her post op appointment, which will be two weeks later. Heikki will more than likely come home after her surgery (and after she opens her eyes so she can see her Daddy!)
This drive home was much different than last time (and for the better). I called Heikki and mom with a clear head. I know in my heart and mind that we are doing the right thing. I want this day to get here so bad! I want her recovery to start ASAP! I keep telling myself....by Halloween, Hanna is going to be her normal little self and trick or treating with her big sister!
Hanna will begin injections and medicine next week. Until Hanna's next update, more prayers are wanted and appreciated!
Love to All,
Hanna's Mommy
While we were in the appointment Dr. C went over all the questions that I had and talked about each one thoroughly. What I love about this doctor is that he does not make me feel stupid, as stupid as the question may be! He asked me if I wanted to see pictures of an actual surgery. I said yes, I needed to see it. If my daughter can actually go through it, then I need to be able to be strong enough to look at pictures. It was pretty gruesome and I will not go into details buut what I can say about this procedure is I am AMAZED at the stuff that doctors can do these days!
Dr. C also told me about what I can expect. I do plan on posting pictures of what Hanna looks like after surgery. We have planned on Hanna being in the hospital for about 3 days. Intensive care for 1 or 2 days, depending on her blood level, and then 1 or 2 days on the regular floor. The Dr. has warned me that her eyes will be swollen shut for 4-5 days and her head will be extremely swollen. So these two things are freaking me out a bit right now. Supposedly after her eyes begin to open then she will start to act like the little girl we all know. She may be a little more clingy at first...(how awesome is that...I just get to hug on her more!) I asked how much pain she should be in and the Dr told me that in his older patients that go through this they say there isn't so much pain (surprisingly enough), the part that is so hard on the patients is the swelling of head and eyes.
The part that made me feel as though we are doing the right thing is when I saw Hanna's pictures. These pictures are from the first meeting and pictures from about 4 weeks ago. After looking at the pictures I see HUGE changes, and not positive changes. So, right at that time I said, yes, we are doing the right thing.
After Dr. C went through all the "possible complications"...no need to mention...I signed consents and off I went!
More than likely after surgery I will stay in Temple until her post op appointment, which will be two weeks later. Heikki will more than likely come home after her surgery (and after she opens her eyes so she can see her Daddy!)
This drive home was much different than last time (and for the better). I called Heikki and mom with a clear head. I know in my heart and mind that we are doing the right thing. I want this day to get here so bad! I want her recovery to start ASAP! I keep telling myself....by Halloween, Hanna is going to be her normal little self and trick or treating with her big sister!
Hanna will begin injections and medicine next week. Until Hanna's next update, more prayers are wanted and appreciated!
Love to All,
Hanna's Mommy
Saturday, August 27, 2011
A Mother's Nightmare...Craniosynthosis
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!! ;)
Subscribe to:
Posts (Atom)