I promised myself I would do anniversary posts about our cranio journey. I am about 14 days late, but here is our 6 months post-op update. Several people have asked why I didn't keep up with just a family blog, my answer is simply if I could type while I sleep then I could make time for it! In all honesty I am not a sentimental, emotional, lay it all out there type of person. This blog was the only way to get out my raw feelings about how jaded and angry I was that something like this happened to me, and by me, I mean my daughter. Being vulnerable to others is not my thing, it really just aggravates me more, thus making matters worse.
Since our surgery in February many things have occurred. We had our several follow ups with plastics and Dr. Honnebier was pleased with the surgery and PA's newly formed head. All scars and drainage tube marks healed nicely as well.
We had our journey with the pink helmet. I must say that PA wore it nicely. We were so blessed that she got it off just in the knick of time for summer, because that thing smelled worse than a junior high boy's locker room. I am not sure what we would have done if she had it in mid-July! She would have cleared a room in seconds! We had the expected odd looks and whispers (that we could totally hear), but in all it wasn't near as bad as we had imagined.
Although 6 months is a long time, I sometimes look at the faint zig zag scar through her fair hair and get so overwhelmed at what she went through. It makes my chest hurt and a pain deep in my stomach happens just thinking about it. It seems like yesterday Andrew had to basically carry me out of the room we left her in to go to surgery.
I am a member of several cranio support groups on social networks. Andrew has told me to stop reading them because I make myself a nervous nutcase wreck. Everyday I read about a child who had their surgery then randomly needed another corrective surgery right before they hit that magic clear mark of 5 years old. I continue to read because the last thing I want is to be completely blindsided again with an additional surgery. I pray every night that we are finished. I pray every day that she does not have to through that again. I pray every time I read one of those stories for that family that has to endure that awful process once again. It is simply a waiting game and we are not taking any second for granted.
Presley makes me so happy. People say that they cannot remember life before their kids. Well, I can clearly remember life before kids; I slept in, I had money to blow on pointless items, I wore make-up, my floor didn't have juice stains, my living room didn't look like Toys R Us, not to mention I had no clue who the Bubble Guppies were and I was totally okay with that fact. I can remember life before Presley, I just cannot recall what made me as happy as she does. She is our everything and we are so lucky that her cranio story thus far is a success.
Six more months until our one year follow up. Prayers are always appreciated for good news:)
Saturday, August 17, 2013
Monday, February 11, 2013
A Week Out
It feels as though this exact time last week was a million years ago. One week ago I sat straight up in our bed staring at Presley crying my eyes out in fear of what would happen in the next several hours. Today, I sit staring at the miracle we were given and how lucky we have been.
I had heard about his feeling you get as a loved one is going through such a difficult time. It is a feeling of calmness that you cannot begin to explain to others when in reality you should be freaking out. I think I felt that while in PICU. It could have been a mixture of utter exhaustion, the staff's loving care, the fact that Presley did do well in surgery, but mainly I believe it is because of the outpouring of support and prayers our family, friends, friends of friends, and pure strangers sent our way.
Before Presley, I use to cringe when people would make a reference to having children and "not understanding" until you have one. That whole comparison really would just piss me off like I was not a person capable of feeling a certain type of love. It is the epitome of cliche, but it is true. The love you have for your child is a feeling like no one can explain until you have one. I do however have a mom confession. Some people say that you get that feeling while you are pregnant. That feeling of attachment and pure love for something you haven't even seen or met. I didn't have that. I tried to, I even acted as though I did, but I didn't. Don't get me wrong, I loved the Presley in my belly, but I didn't know her. I loved the thought of her and the plans I would make for her future, but I honestly didn't have that intense feeling of love until I held her for the first time. If possible, my love for Presley has doubled in the last half dozen days. She is such a strong person. She endured more medical attention in two months of her life than her mom and dad combined. She is our little cranio trooper.
I mentioned a few blogs back about being somewhat pessimistic. I hate to admit it, but it is what people with worrying characteristics have to carry. I feel as though our journey at ACH was just too good to be true. I may be going through some post traumatic stress situation, but I keep holding my breath like another bomb is going to drop on us. Thus, why I am typing this blog at 1am. Presley was a champ during her surgery. She went in, anesthesia took a little longer than expected-no biggie, they performed the CVR, she woke up, she lost some blood-it resolved, she recovered, we went home. Minus a million small details, that was her experience. We went home at the absolute minimum a patient that requires that surgery can be discharged. She took infants Tylenol for 36 hours after we came home and then she was fine. I am not downplaying her surgery or stay at ACH at all, it was an emotional blur, but she is the same Presley. My mind is blown at how she is crawling, pulling up on things, babbling, smiling, growing more teeth, and her newest trick; clicking her tongue. I guess I was expecting the absolute worst and received the absolute best. Thankful is not near the word we are for how she recovered, but it just leaves a tiny bit of fear that it is not over. Now I pray that her follow up on Friday is just as smooth. I pray really really hard. Fingers crossed I am just a crazy worried momma.
I have learned a great deal from this whole experience. I am positive that my greatest strength after it all is the gain of empathy. My heart breaks for the parents who are at ACH, or any hospital for extended stays. A niece of a friend who celebrated her first birthday at ACH, the toddler who was next door to us in PICU, the child who shared a room with us in the step down rooms who had been there a month monitoring her seizures, families who are in an out trying to find answers for their kids delays, and especially the ones who never leave. Morbid moment, but I am at awe of the strength some parents have to overcome such an obstacle. I truly feel for those loved ones in the waiting rooms or the zombie-like parents walking the halls. It is a feeling I wish upon nobody and pray we do not have to endure again.
The doctors, the nurses, and the ACH staff, are amazing. That is all I can utter, simply amazing. I am annoyingly hard to please when it comes to intellectual staff and good service at a hospital. Point for proof, I was eight months pregnant and nearly ran a nurse out of my dad's room after his total hip replacement because she was incompetent for his care. ACH would have my recommendation any day. I trusted them with my daughter's life and they have my utmost gratitude for her care while we were there.
There is no way to list or give adequate thanks for everyone who has touched our lives through this journey. Prayer is powerful and we have proof. A prayer promise is something so small that is huge in the life of another. We are forever thankful for all the prayers that people took time to say. We truly have the best family and friends anyone can ask for. I know I would have never made it without each and every uplifting card, text, Facebook status, call, gift, meal, and visit from our closest loved ones. My dad has mentioned on several occasions how I have the most wonderful friends. I remember him saying that at my wedding, when Presley was born, and this past week he made note of it again. He is right, he is actually always right, I couldn't have made it without them.
Follow up appointment is on Friday. We get fitted for the helmet and hear what/where to go next. I will update after that visit.
I have a little something up my sleeve. It is not definite yet, it may not even work out.....but maybe things do happen for a reason.
I had heard about his feeling you get as a loved one is going through such a difficult time. It is a feeling of calmness that you cannot begin to explain to others when in reality you should be freaking out. I think I felt that while in PICU. It could have been a mixture of utter exhaustion, the staff's loving care, the fact that Presley did do well in surgery, but mainly I believe it is because of the outpouring of support and prayers our family, friends, friends of friends, and pure strangers sent our way.
Before Presley, I use to cringe when people would make a reference to having children and "not understanding" until you have one. That whole comparison really would just piss me off like I was not a person capable of feeling a certain type of love. It is the epitome of cliche, but it is true. The love you have for your child is a feeling like no one can explain until you have one. I do however have a mom confession. Some people say that you get that feeling while you are pregnant. That feeling of attachment and pure love for something you haven't even seen or met. I didn't have that. I tried to, I even acted as though I did, but I didn't. Don't get me wrong, I loved the Presley in my belly, but I didn't know her. I loved the thought of her and the plans I would make for her future, but I honestly didn't have that intense feeling of love until I held her for the first time. If possible, my love for Presley has doubled in the last half dozen days. She is such a strong person. She endured more medical attention in two months of her life than her mom and dad combined. She is our little cranio trooper.
I mentioned a few blogs back about being somewhat pessimistic. I hate to admit it, but it is what people with worrying characteristics have to carry. I feel as though our journey at ACH was just too good to be true. I may be going through some post traumatic stress situation, but I keep holding my breath like another bomb is going to drop on us. Thus, why I am typing this blog at 1am. Presley was a champ during her surgery. She went in, anesthesia took a little longer than expected-no biggie, they performed the CVR, she woke up, she lost some blood-it resolved, she recovered, we went home. Minus a million small details, that was her experience. We went home at the absolute minimum a patient that requires that surgery can be discharged. She took infants Tylenol for 36 hours after we came home and then she was fine. I am not downplaying her surgery or stay at ACH at all, it was an emotional blur, but she is the same Presley. My mind is blown at how she is crawling, pulling up on things, babbling, smiling, growing more teeth, and her newest trick; clicking her tongue. I guess I was expecting the absolute worst and received the absolute best. Thankful is not near the word we are for how she recovered, but it just leaves a tiny bit of fear that it is not over. Now I pray that her follow up on Friday is just as smooth. I pray really really hard. Fingers crossed I am just a crazy worried momma.
I have learned a great deal from this whole experience. I am positive that my greatest strength after it all is the gain of empathy. My heart breaks for the parents who are at ACH, or any hospital for extended stays. A niece of a friend who celebrated her first birthday at ACH, the toddler who was next door to us in PICU, the child who shared a room with us in the step down rooms who had been there a month monitoring her seizures, families who are in an out trying to find answers for their kids delays, and especially the ones who never leave. Morbid moment, but I am at awe of the strength some parents have to overcome such an obstacle. I truly feel for those loved ones in the waiting rooms or the zombie-like parents walking the halls. It is a feeling I wish upon nobody and pray we do not have to endure again.
The doctors, the nurses, and the ACH staff, are amazing. That is all I can utter, simply amazing. I am annoyingly hard to please when it comes to intellectual staff and good service at a hospital. Point for proof, I was eight months pregnant and nearly ran a nurse out of my dad's room after his total hip replacement because she was incompetent for his care. ACH would have my recommendation any day. I trusted them with my daughter's life and they have my utmost gratitude for her care while we were there.
There is no way to list or give adequate thanks for everyone who has touched our lives through this journey. Prayer is powerful and we have proof. A prayer promise is something so small that is huge in the life of another. We are forever thankful for all the prayers that people took time to say. We truly have the best family and friends anyone can ask for. I know I would have never made it without each and every uplifting card, text, Facebook status, call, gift, meal, and visit from our closest loved ones. My dad has mentioned on several occasions how I have the most wonderful friends. I remember him saying that at my wedding, when Presley was born, and this past week he made note of it again. He is right, he is actually always right, I couldn't have made it without them.
Follow up appointment is on Friday. We get fitted for the helmet and hear what/where to go next. I will update after that visit.
I have a little something up my sleeve. It is not definite yet, it may not even work out.....but maybe things do happen for a reason.
Wednesday, February 6, 2013
PICU Princess
It is late, and I am exhausted. Andrew and I are taking turns staying awake as we sit with PA in the PICU, so excuse any grammatical mistakes.
Today was the day. I cannot convey the somber feeling that was over our car as the three of us drove the ACH yesterday morning. We were silent with the exception of the random sniffles I could not hold in. Presley made the whole experience more painful to me by being her charming adorable self. I was in an emotional war between what I wanted and what I knew had to happen. She was so happy and it crushed me knowing that she had no clue what was about to happen.
Skipping past the admission process, as Presley rolled away from us sitting on her oversized bed for her 19 pound body, I think my heart stopped.
Then came the waiting. And waiting. And waiting. Thank God for family and friends who helped keep a nervous wreck mom and dad as preoccupied as possible.
The waiting was bad, but not as terrorizing as I expected. The four hours seemed to crawl by, but in the grand scheme of things I felt as though Dr. Honnebier and Dr. Cai were out smiling with me in no time. They both agreed on a successful surgery.
80% of cranio surgeries require a blood transfusion. PA did not need one during the surgery, but she did need one as she was admitted to the PICU. The drainage tube releasing the excess blood from her skull was exerting more blood than they were satisfied with. They PICU team and Dr. Cai stayed very vague about what was going on (not the best way to approach me personally) but we could tell it was serious. Thankfully after about 3 hours, her blood began to clot better and the drainage subsided.
My worst fear, as of yesterday morning, past the actual surgical procedure, was seeing her for the first time. I was pleasantly surprised that our little angel looked the exact same....with some bruised eyes and her little "bandage crown". She has tolerated pain incredibly well and is a trooper in our eyes.
So far so good. With a minor confusion with anesthesia and scheduling yesterday (long story, but obviously it was taken care of) the staff has been top notch. Anesthesia, pre-op nurses, neuro, plastics, PICU staff, even the sign in employees have set the standard for hospitality and professionalism.
We still have a long road ahead of us. Fingers crossed, that this will be our only night in PICU and we will reside in a normal room tomorrow, and our home the next.
We are forever grateful for the kind messages, texts, ACH emails, phone calls, check ins, care packages, visits, and most importantly your time, support, and prayers towards our angel Presley.
Andrew and I experienced a moment in the PICU that no parent should ever have to endure. As visiting hours closed and the lights went down on our floor, the commotion we heard in the room next to us chilled our entire body. The rooms are divided by a mere glass door and curtain so we were very aware of what was going on. That very moment we realized how serious this night could be for any of the 19 children occupying this very unit.
Tomorrow will be a new day. We will keep everyone posted, and again thanks for lifting our family up through this trying period in the long road of Presley's life.
Today was the day. I cannot convey the somber feeling that was over our car as the three of us drove the ACH yesterday morning. We were silent with the exception of the random sniffles I could not hold in. Presley made the whole experience more painful to me by being her charming adorable self. I was in an emotional war between what I wanted and what I knew had to happen. She was so happy and it crushed me knowing that she had no clue what was about to happen.
Skipping past the admission process, as Presley rolled away from us sitting on her oversized bed for her 19 pound body, I think my heart stopped.
Then came the waiting. And waiting. And waiting. Thank God for family and friends who helped keep a nervous wreck mom and dad as preoccupied as possible.
The waiting was bad, but not as terrorizing as I expected. The four hours seemed to crawl by, but in the grand scheme of things I felt as though Dr. Honnebier and Dr. Cai were out smiling with me in no time. They both agreed on a successful surgery.
80% of cranio surgeries require a blood transfusion. PA did not need one during the surgery, but she did need one as she was admitted to the PICU. The drainage tube releasing the excess blood from her skull was exerting more blood than they were satisfied with. They PICU team and Dr. Cai stayed very vague about what was going on (not the best way to approach me personally) but we could tell it was serious. Thankfully after about 3 hours, her blood began to clot better and the drainage subsided.
My worst fear, as of yesterday morning, past the actual surgical procedure, was seeing her for the first time. I was pleasantly surprised that our little angel looked the exact same....with some bruised eyes and her little "bandage crown". She has tolerated pain incredibly well and is a trooper in our eyes.
So far so good. With a minor confusion with anesthesia and scheduling yesterday (long story, but obviously it was taken care of) the staff has been top notch. Anesthesia, pre-op nurses, neuro, plastics, PICU staff, even the sign in employees have set the standard for hospitality and professionalism.
We still have a long road ahead of us. Fingers crossed, that this will be our only night in PICU and we will reside in a normal room tomorrow, and our home the next.
We are forever grateful for the kind messages, texts, ACH emails, phone calls, check ins, care packages, visits, and most importantly your time, support, and prayers towards our angel Presley.
Andrew and I experienced a moment in the PICU that no parent should ever have to endure. As visiting hours closed and the lights went down on our floor, the commotion we heard in the room next to us chilled our entire body. The rooms are divided by a mere glass door and curtain so we were very aware of what was going on. That very moment we realized how serious this night could be for any of the 19 children occupying this very unit.
Tomorrow will be a new day. We will keep everyone posted, and again thanks for lifting our family up through this trying period in the long road of Presley's life.
Saturday, February 2, 2013
2 Days Left
The best way to describe our lives since December 13 is a roller coaster. We have had fun moments with Presley; getting FOUR teeth, crawling, pulling up on things, and daily smiles that melt our hearts. We have had times where we just want to scream, me more than Andrew because he never shows that he is scared. There have been times where I felt like throwing up just thinking about the dreaded Tuesday. Then there are days like this past week where all you want to do is close your eyes and pray that it is over.
I am not one to always be the relaxed, go with the flow kind of person. My type A personality with diagnosed OCD hinders my ability to see clearly day to day because I am always thinking ahead, organizing, and trying to be Miss Prepared. It has been a struggle, but I have really slowed down and tried to spend the most quality time with PA as possible just one day at a time. I was pretty proud of my self until this past week. All the emotions, fears, and questions that I have kept hidden so deep in my heart came out with full force. There hasn't been a day with dry eyes, a day were I do not kiss her little ridge thinking it will magically go away, a day where Andrew hasn't had to give me a pep talk to help me sleep, or a day that I BEG God to keep her safe on the 5th.
Everyone has their own way of praying. I know that there is not a "wrong" way to pray, but my whole life I felt as though my personal prayers to God have been a little lame. I had a routine (shocking that even my prayers are on a schedule), every night I thank him for the day, ask for forgiveness for my wrong doings, bless my family and dear friends, help me be a better person, and then end with special intentions. My prayers have been much more detailed, frequent, and less routine since that awful Thursday in December. I will count that as a positive from this experience.
When I was pregnant, I got the mother load of parenting advice. Older family members, friends with kids, friends without kids, strangers at Bed Bath and Beyond, men, co-workers, neighbors, waitresses, and even my 15 year old male students had advice to give to a new mom. Some were helpful, others should probably never be repeated as "advice" again. It is human nature to want to help someone and give them any tips that you may make their experience pleasant. Everyone knows labor is painful. That is the understatement of the year. The pain you feel when having a baby is so mysterious to me. Immediately after having Presley that pain disappears. The agonizing two hours I went through was all just a faint feeling. I remember it hurting (insanely bad) but I cannot remember that actual pain. My point is, being a parent hurts. It starts at birth. The good thing, in my case, is that I do not remember that pain. Being a parent really hurts when your child hurts. The feeling that my heart is being ripped out because of what Presley is about to go through is the worst pain I have ever felt in my life. Not one person's advice can prepare you for that. Nobody. I am not prepared to see my baby girl bruised, swollen, eyes shut, and a gash in her skull. I do not think my heart will be able to handle it.
We go to ACH on Monday to have her blood work done. We will also get to meet Dr. Cai her neurosurgeon. On Tuesday, we are to be there at 6:30, they will take her at 8:30, and surgery will begin around 9:30. We hope to hear word from the team by 11:30 or noon. I (or my sister) will keep the blog updated on her recovery in PICU.
We have some very loving people in our lives. Andrew, Presley, and I are so blessed with a fantastic group of friends and family who have really been the ones to hold us up through this whole time. From family, friends, co-workers, neighbors, league members, Knights, and new friends we have met with similar experiences have truly been the reason we are making it. My work family has been amazing. I cannot begin to explain how lucky PA and I are to be apart of such a wonderful facility that has amazing and caring staff. One of my many breakdowns was when Presley's teacher sent home a little string of baby handprints from her classmates with get well wishes on it. That will definitely be hung with care in her hospital room. We are amazed at the prayers and support we have been given. Words will never be adequate for how grateful we are.
I have multiple contacts with my best friend from high school daily. Usually the texts we send are sarcastic, funny, or good gossip. The phone conversations are usually complaining about the husbands, talking about the kids, and trying our best to squeeze in plans to see each other although we are 150 miles apart. Our emails consist of links to funny blog exerts or cute kid clothes. The email I received on Friday was on a more serious note but it also put things in a timely perspective, one that I had not looked at yet.
I am not one to always be the relaxed, go with the flow kind of person. My type A personality with diagnosed OCD hinders my ability to see clearly day to day because I am always thinking ahead, organizing, and trying to be Miss Prepared. It has been a struggle, but I have really slowed down and tried to spend the most quality time with PA as possible just one day at a time. I was pretty proud of my self until this past week. All the emotions, fears, and questions that I have kept hidden so deep in my heart came out with full force. There hasn't been a day with dry eyes, a day were I do not kiss her little ridge thinking it will magically go away, a day where Andrew hasn't had to give me a pep talk to help me sleep, or a day that I BEG God to keep her safe on the 5th.
Everyone has their own way of praying. I know that there is not a "wrong" way to pray, but my whole life I felt as though my personal prayers to God have been a little lame. I had a routine (shocking that even my prayers are on a schedule), every night I thank him for the day, ask for forgiveness for my wrong doings, bless my family and dear friends, help me be a better person, and then end with special intentions. My prayers have been much more detailed, frequent, and less routine since that awful Thursday in December. I will count that as a positive from this experience.
When I was pregnant, I got the mother load of parenting advice. Older family members, friends with kids, friends without kids, strangers at Bed Bath and Beyond, men, co-workers, neighbors, waitresses, and even my 15 year old male students had advice to give to a new mom. Some were helpful, others should probably never be repeated as "advice" again. It is human nature to want to help someone and give them any tips that you may make their experience pleasant. Everyone knows labor is painful. That is the understatement of the year. The pain you feel when having a baby is so mysterious to me. Immediately after having Presley that pain disappears. The agonizing two hours I went through was all just a faint feeling. I remember it hurting (insanely bad) but I cannot remember that actual pain. My point is, being a parent hurts. It starts at birth. The good thing, in my case, is that I do not remember that pain. Being a parent really hurts when your child hurts. The feeling that my heart is being ripped out because of what Presley is about to go through is the worst pain I have ever felt in my life. Not one person's advice can prepare you for that. Nobody. I am not prepared to see my baby girl bruised, swollen, eyes shut, and a gash in her skull. I do not think my heart will be able to handle it.
We go to ACH on Monday to have her blood work done. We will also get to meet Dr. Cai her neurosurgeon. On Tuesday, we are to be there at 6:30, they will take her at 8:30, and surgery will begin around 9:30. We hope to hear word from the team by 11:30 or noon. I (or my sister) will keep the blog updated on her recovery in PICU.
We have some very loving people in our lives. Andrew, Presley, and I are so blessed with a fantastic group of friends and family who have really been the ones to hold us up through this whole time. From family, friends, co-workers, neighbors, league members, Knights, and new friends we have met with similar experiences have truly been the reason we are making it. My work family has been amazing. I cannot begin to explain how lucky PA and I are to be apart of such a wonderful facility that has amazing and caring staff. One of my many breakdowns was when Presley's teacher sent home a little string of baby handprints from her classmates with get well wishes on it. That will definitely be hung with care in her hospital room. We are amazed at the prayers and support we have been given. Words will never be adequate for how grateful we are.
I have multiple contacts with my best friend from high school daily. Usually the texts we send are sarcastic, funny, or good gossip. The phone conversations are usually complaining about the husbands, talking about the kids, and trying our best to squeeze in plans to see each other although we are 150 miles apart. Our emails consist of links to funny blog exerts or cute kid clothes. The email I received on Friday was on a more serious note but it also put things in a timely perspective, one that I had not looked at yet.
4 days until Presley gets better
4 days until I get to hug you
6 days until you guys are home
8 months until you get to have tea with the Duchess
9 months until Presley begins her flower girl duties
11 months until Christmas
Now we can say 2 days........
Monday, January 7, 2013
We Have A Date
The very much anticipated date has been set. It has became very real to us that Presley is going to have her surgery. She will have her sagittal craniosynostosis surgery on Tuesday, February 5th. We have 29 days to fully prepare ourselves emotionally and love on her every second. We then will sit through what will probably be the longest 3 hours of our lives. On the afternoon of February 5th we look forward to sitting with our sweet baby, comforting her, and hoping that this will all be behind us.
Many friends have asked how they can pray for us. We now hope that she can stay well (no more colds, congestion, etc) so anesthesia will clear her for safe surgery and we will not have to deal with a reschedule. So pray for wellness for the next couple of weeks!!
Wednesday, January 2, 2013
The Verdict
Once again, a medical professional used the term "soon" without further explanation. The way her surgery date is set is through scheduling with the plastic surgeon, neurosurgeon, anesthesia, etc, etc, which I am positive is a daunting task. I didn't let the term "soon" go by as easily this time. When asking what "soon" was, I assumed it would be in the next couple of months. I was a little stunned when she said in the next three weeks. One problem stands in the way of that date though. On New Year's Eve I took Presley to the pediatrician for some congestion and left with an inhaler for RSV. The clinic said it is spreading like wildfire this season. We are on the downhill spiral of her virus and she shouldn't be contagious any longer. To make sure Presley (and all her little daycare pals) stay healthy we are keeping her away until Monday. Anesthesia will not compromise (thank God) her airway during a four hour surgery and she will need to be completely cleared of all respiratory issues by surgery time. If she isn't cleared by the set date, we will have to reschedule. ACH will be contacting me within a few days for a date.
Just a little information about the procedure and recovery.
-Duration of surgery is about 3-4 hours
-She will have a breathing tube
-The chances of her having a blood transfusion are very likely. We chose to use the blood bank because it is "researched" the safest. We will donate blood to the red cross in her honor for future recipients.
-Her scar will be about 2 inches on the crown of her head. Endoscopic surgery is an option, but for her type of craniosynostosis the scarring would be the same as the regular surgery and the regular surgery gives the surgeons a direct view of their work.
-She will stay in ICU for the first night for monitoring
-The second night she will stay and her drainage tube will be removed
-When she comes home they claim she will be the same baby as we took in (believe me I was drilling them on set-backs, delays, any form of disruption in her development)
-A week after surgery she will have to wear a helmet for up to 90 days. I have already got the velcro ready for bows! The helmet is not for safety, but for moulding purposes.
-Two to three weeks post surgery she can return to daycare
-She will have yearly checkups until she is five years old, then they will discharge her visits if all goes perfectly
The OCD over prepared person I am, came in with a two page typed list of questions that she answered without hesitation on any. Although this is Dr. Honnebier's life, and she sees these cases (and worse) daily she didn't once downplay Presley's condition or surgery. She was direct and told us what we needed to know.
Obviously with any surgery there could be complications, and I am well aware of what the worst can be. Blood loss was the highest priority that she wanted to inform us of. After surgery, it is possible that her bones could not grow back together leaving her with the opposite problem, and having an open soft spot. Another surgery could be done, or she could just have to be cautious, such as no contact sports. We will pray that is not another issue we have to overcome.
Both my mom and my best friend mentioned today that I was calm when giving them these facts. I was explaining to my friend Brock that it is almost surreal. I have cried so much at the beginning, praised so much when we found out it wasn't brain damage, that now I am just blank. During our consultation today I felt like I was doing an interview on a case for someone else's child. I know that sounds outlandish but I was so focused on getting all the information I could I forgot for a second what was going to happen to my baby girl. I do not want them to cut into her head. I do not want her to have to have a blood transfusion. I do not want her to have a scar. I do not want them to shave her hair that we have worked so hard on. I do not want her to be swollen after surgery. I do not want her to have serious anesthesia. I do not want to hear the risks after surgery. And, I do not want her to wear a helmet. This procedure, as we have decided, must be done, whether I want it or not. That day will be here "sooner" rather than later, and we will handle it the best we can.
Thanks for all the texts, calls, cards, messages, prayers, and love. It means the world to us that people are supporting PA.
Tuesday, January 1, 2013
Hopes for 2013
Andrew and I can both agree that 2012 was a tremendous year of emotions for our little family. May 8th, 2012 was the best day of our lives. Presley joined us and has not stopped bringing smiles to our days since. She has given us so much joy that it would be impossible to express adequately. December 13th, 2012 was the worst day of our lives when we realized the road ahead dealing with her craniosynostosis.
2013 is starting off with our meeting with the craniofacial team and plastic surgeon tomorrow. From there we will determine what is best for Presley. We will enter with an open mind and choose selflessly on what is most beneficial for her, not only now, but 30 years from now.
Tomorrow is also mine and Andrew's 3rd anniversary. A cold Saturday three years ago we promised for "better or for worse". Tomorrow we hope we get a better rather than a worse. We will keep everyone updated!
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