I drive past Arkansas Children's Hospital at least once a week, I have numerous friends who work there, and nearly all my therapy clients have a great history with ACH, yet until today I have never stepped foot in their facilities. Our experience there today was phenomenal. The admission staff, financial aid staff, nursing staff, anesthesia staff, and neurosurgery staff where all top notch. We even got to see a nurse who is a parent of one of my kiddos. She will never know how much just speaking to a familiar face was consoling. Whether a Pulaski county resident or anywhere in the state of Arkansas, we are truly fortunate to have such an amazing place for answers and resources.
Andrew and I were the calm, cool, and collected parents today.....until we were told we had to leave in ambulatory surgery for anesthesia. My legs completely went numb and I couldn't even muster up an "I love you" to her. While sitting in the waiting room with Andrew and Holly, my mind was blank I honestly couldn't even pray because I couldn't make a complete thought. There were dozens of families in that same waiting room and their faces were blurs. I couldn't even tell what the room looked like. When they called our last name I basically left Andrew in the dust to carry all our bags to get back to her recovery room. I could hear her cry 6 curtains away. When she saw me she reached for me. I breathed a sigh of relief. The first step was over.
From our visit today we discovered that Presley has the most common type of craniosynotosis. Her sagitial suture fused together before birth. With craniosynostosis, the more sutures fused, the worst prognoses. Here is were our miracle unfolds. One week ago with the x-rays (unbeknownst to us) all of her sutures showed to be closed. Today, the CT scan (which is the most accurate) showed only her sagitial to be closed!!!!!!!!! We are without a doubt 100% sure it is a marvelous act due to all the love and prayers sent her way!
Our findings today show that she does not, and most likely will not, suffer from any brain damage, delays, headaches, eye problems, hearing loss, etc. Surgery is still an option. It is recommend by the neurosurgeon we saw today to still plan on surgery. Although this thought sends chills to my deepest bones, a huge weight has been lifted that it is not "life or death". We will meet with the craniofacial team in January to discuss her future. The surgery is highly recommended before her 1st birthday. I cannot speak for Andrew on this thought, mainly because we have only spoke of good thoughts since 12:40 today, but we can now move on knowing her brain isn't at jeopardy at this exact moment. Surgery brings a whole new world of thoughts, emotions, fears, and questions. We will cross that bridge in January.
When I was pregnant, one of my therapy moms asked me if I was happy that she was a girl (after our gender reveal). I told her what sounds like the cliche answer "I am happy she is healthy". I meant every word of that statement then and now. This mom of a child who has had a huge journey with her medically fragile child told me; "Tasha, no one prays for a child with disability, but you learn to love more than ever". This past week, I know now what she means more than ever.
There are no adequate words or expressions to convey our gratitude for the love, support, and outpouring of kindness we have been shown in the last few days. We appreciate every little thought that has helped our Presley, the love of our life, to have good news. Thank you all!
Thursday, December 20, 2012
Tuesday, December 18, 2012
One Day At A Time
If it is physically possible to have your heart so full yet so broken I think mine was at that point today. Andrew and I are beyond blessed and completely in awe for the love and support our family, friends, co-workers, friends of friends, and even strangers have shown us in the last 24 hours. Please know that every text, comment, phone call, message, and condoling hug means more than we can express. Each message is taken to heart. Each personal experience makes our world seem closer to normal. Each contact with a medical professional that could benefit PA helps us feel hope. Each prayer promise helps us breathe a little easier. We are trying to keep all of our attention on Presley. If we ever miss a reply to message please know we are truly appreciative of your time and energy put towards our family.
Today I spoke with ACH. About 10 times. My frustration was building being passed around to each department and given conflicting information. The second to last lady I spoke to was a true angel. She set everything straight and calmed me down off my ledge. We do know that PA will be having a CT scan on Thursday. She will have to be put under anesthesia for the process. The plan then is to see the neurosurgeon and talk about her future with craniosynostosis that same afternoon.
Being told she had to have a CT scan and anesthesia didn't hit me as hard since I had prepared for this phone call mentally. What I had not prepared for was the questionnaire concerning her health being adequate for the actual anesthesia they would use. Anesthesia was a huge concern of mine from the beginning and I know the harsh side effects it has on people, let alone babies. Knowing that I could harm her more by answering a question wrong made me nauseous. As the nurse went through her list (which I am sure she does twenty times a day) I stuttered answering the most simple questions. My brain could not overcome the thought of me potentially not being the perfect mom and answering the questions with the most thorough answer I could recall.
Someone told me today that the power of being positive is greater than you would expect. That is hilarious because I am the ultimate pessimist when it comes to situations like this. Thankfully, Andrew is the ultimate optimist and we can usually meet somewhere in the middle to make a normal thought.
So we have decided to end each blog with a positive. We are trying so hard not to change our ways with Presley. We want have Christmas as if their was nothing wrong, play with her like nothing is happening, smile with her like we are not emotionally drained, and celebrate "baby" things along the way. So, positive note; we saw her first tooth today! She officially is not all gums!
Today I spoke with ACH. About 10 times. My frustration was building being passed around to each department and given conflicting information. The second to last lady I spoke to was a true angel. She set everything straight and calmed me down off my ledge. We do know that PA will be having a CT scan on Thursday. She will have to be put under anesthesia for the process. The plan then is to see the neurosurgeon and talk about her future with craniosynostosis that same afternoon.
Being told she had to have a CT scan and anesthesia didn't hit me as hard since I had prepared for this phone call mentally. What I had not prepared for was the questionnaire concerning her health being adequate for the actual anesthesia they would use. Anesthesia was a huge concern of mine from the beginning and I know the harsh side effects it has on people, let alone babies. Knowing that I could harm her more by answering a question wrong made me nauseous. As the nurse went through her list (which I am sure she does twenty times a day) I stuttered answering the most simple questions. My brain could not overcome the thought of me potentially not being the perfect mom and answering the questions with the most thorough answer I could recall.
Someone told me today that the power of being positive is greater than you would expect. That is hilarious because I am the ultimate pessimist when it comes to situations like this. Thankfully, Andrew is the ultimate optimist and we can usually meet somewhere in the middle to make a normal thought.
So we have decided to end each blog with a positive. We are trying so hard not to change our ways with Presley. We want have Christmas as if their was nothing wrong, play with her like nothing is happening, smile with her like we are not emotionally drained, and celebrate "baby" things along the way. So, positive note; we saw her first tooth today! She officially is not all gums!
Monday, December 17, 2012
A Recent Turn of Events
Blogging about our family is something I had never given in to. Partially due to my inability to say things to satisfy everyone's opinion, my fear of confrontation as a result of that, but mainly lack of time that could be spent on sub-par quality sleep.
I have decided to let go of all those fears and record our journey through what will probably be the most difficult, emotional, and faith quaking time of our lives. I am doing this for the sake of our friends and family who are not with us daily and would like to keep up with Presley's path of recovery. We love to know that people are praying for her, thinking of her, or just simply want to know information. We deeply appreciate that. It just becomes exhausting repeating the same information minute after minute and relentlessly trying to not miss a single detail. This will be my saving grace of sanity.
Coincidence is not coincidence at all. It is actually ironic. Some things have so many arrows pointing in the favor of being ironic it is almost impossible not to believe it. My point begins on Thursday, December 13th. Presley and I arrive at school early for a bake sale. Being an hour early we hear the gossip of who is sick and who will be covering for their job that day. Prior to this day 3 out of 5 of Presley's classmates had the stomach bug. Inevitably her sweet teacher came down with something of the same thing. In her place, another co-worker tended to the babies. While this other lady was changing her diaper she noticed a rash. The nurse came in, looked at it, came and found me. I felt like the slacker mom who didn't treat it as it should have been (because it had came and gone for a few weeks). Nonetheless, I was recommended to go to the doctor. Seeing as it was nearly 9am, our pediatrician (who shall remain nameless until further knowledge) was booked so we saw a different one. As the doctor enters the room he goes straight to Presley's head. He continues to feel her bald head as I remind him that her rash is on her stomach. Puzzled he asked if anyone had mentioned her skull to me. Still caught off guard about why he was looking at the wrong anatomy he stopped my answer and told me he would be right back. He came back with a large word for me that would change our whole day, weeks to come, and potentially Presley's life. He informed me that Presley has craniosynostosis. I was so shocked that he had slapped a diagnosis on my daughter that I was speechless. Beyond confused as to why he wasn't concerned about her rash (the reason we came in) was hindering my ability to fully listen to him. It was like he was on a cell phone breaking in and out. I heard "skull", "CT scan", "surgery", "brain development", "soft spot" mumble, mumble, mumble. Panicking inside all I needed was for Andrew to be there. As Presley and I walk downstairs to the radiology department I remember very calming telling Andrew to come. I even thought to myself why am I not crying, why am I not hysterical. It was that moment that I think my entire nervous system was in complete and utter shock. Andrew arrived moments before they took PA back for X-rays. My chest was burning as I watched Andrew lay over her 19 pound body and them snap pictures of her brain. As we were leaving the nurse told us that the pediatrician that we just saw would call us today with the results. She walked us to the door and ended her escort by saying "you have a beautiful little girl". At that very moment I lost all ability to be the calm rational mom that I have been striving to be for the last 7 months.
At 3:30pm the doctor called to confirm that Presley in fact does have what he suspected. This man has been Practicing since the 70's and has only seen 5 cases. The words that I could manage to get out of my mouth were questions that he could not answer. He told me that a neurosurgeon from ACH would be contacting me at the begging of the week. He ended by telling me that she needed surgery now. His "now" wasn't specified, now, this month? Now, by her first birthday? Now, within 2013? When is now?
Craniosynostosis. A word I had never heard or seen. A word that is now said in our home countless times a day. Craniosynostosis is when your skull prematurely fuses together giving no room for your developing brain. It happens in about 1 in 1,900 people. It is considered "rare". Rare. My daughter has a "rare" problem. 1,900-That is half the population of my hometown. There are several types, severity, etc, etc of craniosynostisis. I encourage you to look it up for more information. Lord knows I have read every piece of anything that I could get my hands on. The solution? Surgery. A surgery that is done on her head to MOVE her skull apart for more room. There may or may not be a secondary surgery. Risks include, developmental delay, seizures, eye problems, hearing problems, all the above, none of the above, or maybe brain damage. That last sentence is intended to have every ounce of sarcasm it feels. Brain damage? That exact two word utterance completely crushed my whole world. She could have brain damage? I feel my throat closing in as I type those two incredibly painful words.
This is where I get a little frustrated. Craniosynostosis is usually diagnosed when a child is much younger than my 7 month old daughter. In fact, some cases are diagnosed within weeks of birth. So why are we just now finding out? Another great question. One of the 4 dozen I have ready to take to this neurosurgeon when we finally get an appointment. The waiting game is excruciating. Helpless is all I feel right now.
When I was pregnant I prayed everyday. I prayed everyday for a healthy baby. Ten months of constant prayer for God to make my baby healthy. We were given a perfect angel 7 months ago. As parents you breathe this sigh of relief when your baby comes out "normal", starts hitting milestones at average (or even above average) times, smiles at you, enjoys social interaction, and every little perfect thing about them. It would be an understatement to say we were blindsided by this. Andrew and I have been numb for the past 106 hours. I personally have went through every stage of grieving. I have been sad, tears for hours, tears when she smiles, tears when telling our families, tears laying in bed, tears at church, tears typing this blog, tears, and tears, and tears. I feel as though surely I have no more tears to shed. I have been angry. Why my baby? Why wasn't it caught sooner? Why, why, why?!! It is not fair. Why her head, her skull, her brain!? Anger comes with blaming and questioning God. Blaming my OBGYN for not having a C-section before 2 hours of pushing (possibly causing this), blaming her regular pediatrician for not doing a thorough job, blaming myself for not catching it on my own, and blaming everything on God for teasing me. I know that will be the most controversial thought I will ever say aloud. It happens. It was a thought that ran through my mind that he would give me such a prize possession, make me love her more than anything in the whole world, love her in ways that I could never put into words, then potentially take that same baby away? I just do not have the slightest clue why I deserve this. Guilt came next. I have tried to move on as normal as possible. We haven't met with the surgeon yet, so technically the surgery doesn't exist, which means I can put in the back of my mind. Again, very strong sarcasm. The second I laugh or think about having a good time I feel like my heart is going to burst, reminding me that PA will soon have her skull cut in to. I am now in the dreaded "what if" stage. I have read entirely too much before speaking to the doctor and now I am belligerent with worst case scenarios that could possibly occur. They claim death is "rare". To me the word "rare" has no depth anymore. My daughter has that "rare" diagnosis. "Rare" scares me more than ever.
At church Sunday, Msgr. Malone spoke about Newtown, CT. He spoke about the questions people have reported "Where was God?". His words were perfect. His words made perfect sense. Msgr. Malone said God gave us free will. Free will did all that, not God. God was there with those fearless teachers, staff, and police. I know that the parents of those precious angels that were lost do not want to hear those words, but it helped me for a second. Eventually a second will turn into a minute, minutes will turn into hours, and hours into days to help Andrew and I be the best support we can provide for Presley. God will be there and we are trying our very best to keep that in our hearts and minds.
We are suppose to hear from the neurosurgeon this week. We hope to have some of our questions answered. We will keep everyone posted. Thanks for your love, support, and mostly prayers.
I have decided to let go of all those fears and record our journey through what will probably be the most difficult, emotional, and faith quaking time of our lives. I am doing this for the sake of our friends and family who are not with us daily and would like to keep up with Presley's path of recovery. We love to know that people are praying for her, thinking of her, or just simply want to know information. We deeply appreciate that. It just becomes exhausting repeating the same information minute after minute and relentlessly trying to not miss a single detail. This will be my saving grace of sanity.
Coincidence is not coincidence at all. It is actually ironic. Some things have so many arrows pointing in the favor of being ironic it is almost impossible not to believe it. My point begins on Thursday, December 13th. Presley and I arrive at school early for a bake sale. Being an hour early we hear the gossip of who is sick and who will be covering for their job that day. Prior to this day 3 out of 5 of Presley's classmates had the stomach bug. Inevitably her sweet teacher came down with something of the same thing. In her place, another co-worker tended to the babies. While this other lady was changing her diaper she noticed a rash. The nurse came in, looked at it, came and found me. I felt like the slacker mom who didn't treat it as it should have been (because it had came and gone for a few weeks). Nonetheless, I was recommended to go to the doctor. Seeing as it was nearly 9am, our pediatrician (who shall remain nameless until further knowledge) was booked so we saw a different one. As the doctor enters the room he goes straight to Presley's head. He continues to feel her bald head as I remind him that her rash is on her stomach. Puzzled he asked if anyone had mentioned her skull to me. Still caught off guard about why he was looking at the wrong anatomy he stopped my answer and told me he would be right back. He came back with a large word for me that would change our whole day, weeks to come, and potentially Presley's life. He informed me that Presley has craniosynostosis. I was so shocked that he had slapped a diagnosis on my daughter that I was speechless. Beyond confused as to why he wasn't concerned about her rash (the reason we came in) was hindering my ability to fully listen to him. It was like he was on a cell phone breaking in and out. I heard "skull", "CT scan", "surgery", "brain development", "soft spot" mumble, mumble, mumble. Panicking inside all I needed was for Andrew to be there. As Presley and I walk downstairs to the radiology department I remember very calming telling Andrew to come. I even thought to myself why am I not crying, why am I not hysterical. It was that moment that I think my entire nervous system was in complete and utter shock. Andrew arrived moments before they took PA back for X-rays. My chest was burning as I watched Andrew lay over her 19 pound body and them snap pictures of her brain. As we were leaving the nurse told us that the pediatrician that we just saw would call us today with the results. She walked us to the door and ended her escort by saying "you have a beautiful little girl". At that very moment I lost all ability to be the calm rational mom that I have been striving to be for the last 7 months.
At 3:30pm the doctor called to confirm that Presley in fact does have what he suspected. This man has been Practicing since the 70's and has only seen 5 cases. The words that I could manage to get out of my mouth were questions that he could not answer. He told me that a neurosurgeon from ACH would be contacting me at the begging of the week. He ended by telling me that she needed surgery now. His "now" wasn't specified, now, this month? Now, by her first birthday? Now, within 2013? When is now?
Craniosynostosis. A word I had never heard or seen. A word that is now said in our home countless times a day. Craniosynostosis is when your skull prematurely fuses together giving no room for your developing brain. It happens in about 1 in 1,900 people. It is considered "rare". Rare. My daughter has a "rare" problem. 1,900-That is half the population of my hometown. There are several types, severity, etc, etc of craniosynostisis. I encourage you to look it up for more information. Lord knows I have read every piece of anything that I could get my hands on. The solution? Surgery. A surgery that is done on her head to MOVE her skull apart for more room. There may or may not be a secondary surgery. Risks include, developmental delay, seizures, eye problems, hearing problems, all the above, none of the above, or maybe brain damage. That last sentence is intended to have every ounce of sarcasm it feels. Brain damage? That exact two word utterance completely crushed my whole world. She could have brain damage? I feel my throat closing in as I type those two incredibly painful words.
This is where I get a little frustrated. Craniosynostosis is usually diagnosed when a child is much younger than my 7 month old daughter. In fact, some cases are diagnosed within weeks of birth. So why are we just now finding out? Another great question. One of the 4 dozen I have ready to take to this neurosurgeon when we finally get an appointment. The waiting game is excruciating. Helpless is all I feel right now.
When I was pregnant I prayed everyday. I prayed everyday for a healthy baby. Ten months of constant prayer for God to make my baby healthy. We were given a perfect angel 7 months ago. As parents you breathe this sigh of relief when your baby comes out "normal", starts hitting milestones at average (or even above average) times, smiles at you, enjoys social interaction, and every little perfect thing about them. It would be an understatement to say we were blindsided by this. Andrew and I have been numb for the past 106 hours. I personally have went through every stage of grieving. I have been sad, tears for hours, tears when she smiles, tears when telling our families, tears laying in bed, tears at church, tears typing this blog, tears, and tears, and tears. I feel as though surely I have no more tears to shed. I have been angry. Why my baby? Why wasn't it caught sooner? Why, why, why?!! It is not fair. Why her head, her skull, her brain!? Anger comes with blaming and questioning God. Blaming my OBGYN for not having a C-section before 2 hours of pushing (possibly causing this), blaming her regular pediatrician for not doing a thorough job, blaming myself for not catching it on my own, and blaming everything on God for teasing me. I know that will be the most controversial thought I will ever say aloud. It happens. It was a thought that ran through my mind that he would give me such a prize possession, make me love her more than anything in the whole world, love her in ways that I could never put into words, then potentially take that same baby away? I just do not have the slightest clue why I deserve this. Guilt came next. I have tried to move on as normal as possible. We haven't met with the surgeon yet, so technically the surgery doesn't exist, which means I can put in the back of my mind. Again, very strong sarcasm. The second I laugh or think about having a good time I feel like my heart is going to burst, reminding me that PA will soon have her skull cut in to. I am now in the dreaded "what if" stage. I have read entirely too much before speaking to the doctor and now I am belligerent with worst case scenarios that could possibly occur. They claim death is "rare". To me the word "rare" has no depth anymore. My daughter has that "rare" diagnosis. "Rare" scares me more than ever.
At church Sunday, Msgr. Malone spoke about Newtown, CT. He spoke about the questions people have reported "Where was God?". His words were perfect. His words made perfect sense. Msgr. Malone said God gave us free will. Free will did all that, not God. God was there with those fearless teachers, staff, and police. I know that the parents of those precious angels that were lost do not want to hear those words, but it helped me for a second. Eventually a second will turn into a minute, minutes will turn into hours, and hours into days to help Andrew and I be the best support we can provide for Presley. God will be there and we are trying our very best to keep that in our hearts and minds.
We are suppose to hear from the neurosurgeon this week. We hope to have some of our questions answered. We will keep everyone posted. Thanks for your love, support, and mostly prayers.
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