Jennifer
11-04-2006, 02:15 AM
Here is Emily's story. This has not been updated since March 2005. I will try to update it this week and get the pictures in the appropriate places.....just wanted to get this section started as I am very excited about it.......
I created this story as a letter to Emily, that way, when she is old enough, she can read the story as if I was telling it to her.....
Emily’s Craniosynostosis Story
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(Mommy’s point of view)
Okay, Miss Emily. Because you are too young to remember any of this (thank God!), I have decided to write it all down for you to read later in life. It’s been a rough first few months for you, but hopefully, as I am writing this, the worst is behind you……
When you were about 5 ½ weeks old, your daddy and I noticed a small bump on the left side of your forehead. We asked Sarah if she had happened to accidentally hit you or drop you without us knowing about it. (She was 4 ½ at the time.) She was adamant that nothing had happened, so we decided to call your pediatrician. Luckily, she wanted to see you right away. That Friday afternoon, me and your daddy took you in. Dr Susanne Purnell, looked you over and noticed that you did have some asymmetry in your face. (We had previously noticed that your left eye appeared to be a bit smaller than the other, but assumed it was just newborn squishiness. In fact I remember on the day you were born, I was looking down at you and I commented to your daddy that you did not have the same profile as your sisters…little did I know.) Dr Purnell immediately ordered an X-ray of your head. She explained to us that she believed you may have something called Craniosynostosis- which meant that one of your sutures (later confirmed to be the right coronal suture) had prematurely fused and would need to be fixed by means of surgery. At that point I believe I was in shock. Not my baby. Why would my baby have to go through something like that? I just didn’t understand. We proceeded to take you to get an X-ray. Daddy had to go in the room with you. I could hear you screaming from the other side of the door. I felt so bad for you, but was trying to be strong. After looking at the X-ray, Dr. Purnell was pretty sure it was right coronal cranio, but wanted to make sure. She sent us home and walked the x-ray across the street to one of the technicians at the hospital who then forwarded it to Dr. Wehby to confirm. I just cried on the way home. I had never heard of this before, but the thought of having to give you over to someone who was going to operate on you scared the crap out of me. Thank god for your daddy, I know he was scared too, but was being strong for me. Later that day we got a call from Dr Purnell advising us that yes, it was cranio, assured as that it was ‘fixable’ but that we would need surgery. She referred us to Dr Monica Wehby. As it was Friday afternoon at this point…we didn’t get much further. I believe every time I looked at you that day, I cried. Daddy finally told me that I couldn’t spend the next few weeks crying and that all was going to be okay. That was the last time I cried about it for awhile. We finally got an appointment with Dr Wehby in August. Prior to the appointment I had found some websites on cranio, so I had a bit more information and was a little bit more comfortable going into the doctor. When we initially met Dr Wehby, she just told us the facts. Your daughter has right coronal cranio. We will do surgery to correct it. We will make an incision along her hairline, pull the skin back, cut the skull here, remove this part, reshape the eye socket, reshape this part, put everything back and that’s how it’ll be. (She said it in more medical terms and not quite so bluntly- though she was very matter of fact, but that’s basically what I heard.) Dr Wehby is a very confident lady, who expects nothing but perfection from herself and those around her- she assured us that she wouldn’t finish the surgery until you were perfect. From there she sent us to the front desk to make an appointment for a CT scan and to schedule a surgery date. November 1st. At that point it seemed so far away. Yet as scary as the whole thing was, I wanted it done now, to get it over with. Dr Wehby wanted to perform surgery as close to 4 months as possible, but not a day sooner than four months old. You would be a little over 4 ½ months old on November 1st. We went to get your CT scan in early September. I was scared you would cry and they would need to sedate you, but luckily you fell asleep tight before they called us back and you slept through the whole thing. Later in September we also met with a second neurosurgeon at Dornbecher hospital. After meeting with her, we knew we were making the right choice with Dr Wehby. We then went back to Dr Wehby’s office to meet the plastic surgeon- Dr Wheatly. What a soft spoken guy. He so much added to our comfort level (not that we were ever completely comfortable with all of this.) We then set up an appointment to donate blood and have a pre-surgery appointment with Wehby and Wheatly. I think daily since we found out about the cranio I had been reading posts and making posts on 2 cranio boards I had found. They really helped me to see what the babies would look like out of surgery, to know that this is a bit more common than any of us knew and that everything should be alright. 2 weeks prior to surgery, daddy went to try to give blood. He had a horrid experience and the blood he donated was not able to be used as they didn’t get enough. I tried later that week to give blood, but my iron level was too low. We scheduled an appointment for the next Monday. I ate all the iron I could that weekend, but also had your Aunt Lib come to try to donate if I couldn’t. . Guess what, somehow, my iron level was lower- UGGG! I really wanted to be able to give the blood. No such luck. Your aunt was able to though (not that she was thrilled as she absolutely hates needles!). Last step down. One week to go before surgery.
With one week to go till surgery, I broke down. As I was nursing you Sunday morning, I just looked at you and sobbed. I was so scared for what you had to go through. We laid on the bed and played. I sobbed. Daddy called me on the phone (he and your sisters had gone out for the morning) and I broke down crying again. I kept looking at your little face, wondering how it would look. Realizing that even though one eye was bigger than the other, I loved that big wide eye. Part of my crying was because I was going to miss that eye and the face that I loved. It was a long day. The rest of the week flew by though. Friday morning (3 days before surgery) I tripped while I was going up the stairs (holding you). You had no scraps though, so we figured everything was fine. You were extremely fussy that day and the next though. Saturday night, we realized you weren’t really moving your leg, so Sunday morning (Halloween), we spent in the ER- turns out your femur was fractured! Due to your surgery the next day, your leg just got wrapped in a splint, instead of casting it. By the time we got home from the ER, it was time to get your sisters dressed for Halloween- so Sunday flew by! The anesthesiologist called us Sunday night to let us know that you could only have clear fluids after 4:00AM (which scared me a bit as your normal routine was to wake up and nurse at 4:30 and then again about 6:30AM) and then explained to us that you would have 3 IV’s- one in the neck, one in the arm and one in the leg. (Thank goodness he told me as I would have freaked seeing one in your neck!) He also explained that you would be put to sleep with the gas mask and then he would start everything…..Next thing I know; we are putting you in bed. We tried to wake you up at 3:30 to nurse you, you really weren’t having much of it, you nursed a bit, and then you were wide awake! I was scared to stay to near to you as I didn’t want you to cry because I couldn’t nurse you…. You were amazing though. So calm. Me, you and daddy went downstairs and sat for a while, and then you played in your swing while daddy and I just watched you. Oh, we were so scared for the coming hours.
You fell asleep downstairs on daddy’s lap around 5:00. We carefully put you in your car seat. Thankfully, you stayed asleep. Your grandparents arrived at the house about 5:20 (to watch your sisters) and we left for the hospital at 5:30. That was the longest and quietest 15 minute drive I think I’ve ever taken. Once at the hospital, we had to check in; the receptionist had us pick a teddy bear from this large pile of bears for you to have. When daddy picked up a little bear and the tag said her name was Hope, we knew that was the bear for you. After checking in, we went to a room with 2 cribs. One had your name on it. We were told to change you into your gown and wait for the nurse. We woke you up and changed you and then just waited. (Just typing this is bringing the emotions back.) We were so nervous. You were so calm though- I don’t think you’d ever been that calm and content. (Which again, I thank God for, because if you had been crying, it would have broke my heart even more!) The nurse arrived and you were weighed and measured. Then back to the room to wait for another nurse. http://img.photobucket.com/albums/v426/sjcrmc/Emilys%20Surgery/Waitingtogodowntosurgery211.jpgWe walked the halls a bit. Every time a nurse was in the hall, my heart would stop a bit. Your daddy did such an amazing job of keeping me calm. I saw a nurse come for the child across the hall and saw how they wheeled the bed to the elevator that went to the surgery area- a few tears slipped out at that point. Then it was our turn. In came the nurse to wheel your bed. I don’t remember if it was me or daddy that carried you to the elevator. We all got on this large steel elevator to go downstairs. We were then in a ‘surgery waiting room’ where all the patients wait for the surgeons. The anesthesiologist came in, introduced himself and explained that the surgery would last from beginning to end about 5 hours. It was your time. (Okay, now I’m crying as I type this.) They got a blanket from the warmer and wrapped you in it as I handed you to the nurse. Oh that was so hard. You again didn’t cry- it was like you, my 4 ½ month old baby was being strong for me. As you went through the doors, I did start crying. Another nurse got us some Kleenex and then walked us into the waiting room. The attendant there asked who our surgeon was, and when I said Dr Wehby, she advised me that she was the best neurosurgeon around and that you were in the safest of hands. That made me feel a bit better. Then it was just time to wait. And wait. Grammy and Jadge (your great-grandparents) arrived around 8:00AM- Grammy has a way of just sitting there and making your daddy calm, so I was very grateful they were there. Your Aunt Libby also came by for a bit. They helped make the time go by quicker. Every once in a while, the nurse would come by to update us on how you were doing. Never once was there a problem. All reports said you were doing well. It’s now almost 1:00- you should be almost done. At just after 1:00, I see Dr Wehby and Dr Wheatly walk into the waiting area- smiling! Just seeing them made me feel so much better. They explained that they were done, you had done really well and everything went as expected. (They talked a bit more, but I couldn’t even tell you what they said- all I knew is that you were okay!) It was indescribable the way I just felt this complete relief. I now understood the phrase “It’s like a weight was lifted off of you.” I just felt that weight, disappear (and also just then realized how much stress I had been feeling!)
We had to wait about a ½ hour for you to come out of recovery and then we could go with you up to the PICU. Just about 1:30 you were wheeled past the waiting room doors. You looked so good for what you had just gone through (I had previously had horrible images in my head- prepared for the worst!) After Grammy and Jadge saw you, they went back home. We went with you upstairs, where the nurse commented that you were a little fighter- you woke up in the recovery room screaming mad! And really didn’t want to take your medicine (you never got used to taking the medicine- screamed every time!) Once upstairs, we again had to wait outside while they got you set up in the PICU. After about 20 minutes we went to your room. You were asleep (medicated). http://img.photobucket.com/albums/v426/sjcrmc/Emilys%20Surgery/7hrspostopstitches3.jpgYour stitches looked amazing, so even, every one so precisely spaced and the same width. Hardly any of your hair was shaved- just enough to make the incision. Your forehead no longer had the lump or ‘bossing’ on the left side. You weren’t really swollen at this point. http://img.photobucket.com/albums/v426/sjcrmc/Emilys%20Surgery/2hrspostop-stitches11.jpgThat evening, my friend Nicole stopped in. It gave daddy a chance to walk away for a minute. At that time, they tried to give you medicine, but you wouldn’t calm down. You were screaming so hard. (With good reason!) One nurse came in and was finally able to calm you down by gently stroking is thumb along your forehead and just whispering to you. They then tried to give you your medicine (at this point you were getting some orally and some through the IV) and you screamed again, causing you to choke- at this point a few more nurses came in and started putting something down your throat- I had to step out of the room- I was now crying, again. Within seconds (though to me, it seemed to take forever) you were fine. I was back at your side. Later, when Dr Wehby was visiting, you started to fuss. I was telling you that it was okay, but not touching you. I just remember Dr Wehby grabbing my hand and putting it on your chest- telling me to touch you so you would know I was there, I wasn’t going to hurt you. (I’m not sure why I had been scared to touch you, but I was?) Daddy and I stayed there all night. I slept in a reclining chair. Daddy was in and out- either in the room with you or in the parent’s room, trying to sleep. You stayed in the PICU just the one night. http://img.photobucket.com/albums/v426/sjcrmc/Emilys%20Surgery/24hrspostop11.jpgLate Tuesday morning you were transferred to the regular PEDS unit. While we were happy to be out of the PICU, we were a bit scared as we were moving from having the nurse have only you as a patient and that could see you at all times to a room where the nurses each had up to four patients. We settled into the room and were happy that we weren’t sharing a room (at this point). Tuesday night your sisters and both sets of grandparents came to visit you. I was surprised at how unphased both Sarah (4 1/2yrs) and Reese (almost 2) were. They were very happy to see you, but also very distracted by the playroom they had passed on their way to your room. By the end of Tuesday, you were very swollen. http://img.photobucket.com/albums/v426/sjcrmc/Emilys%20Surgery/Swellingeyes11.jpgYou couldn’t open your eyes. Your ears were starting to fold over as your head was so swollen. When I would hold you, I just remember not believing how heavy your head was. You still had no interest in nursing or taking anything from a bottle. The nurses weren’t too worried as you were still getting fluids through your IV. Wednesday morning was a turning point. While I was taking a shower, Daddy rattled one of your toys for you and got you to smile a bit. When I got out of the shower, your left eye was starting to open. We were so happy to see that eye! http://img.photobucket.com/albums/v426/sjcrmc/Emilys%20Surgery/3dayspost-op11.jpgYour Auntie Libby and then Auntie Heidi & Evan visited you also. We also got roommates (ugg!- that made things a bit more crowded.) That afternoon, Dr Wehby told us you could probably go home on Thursday. Daddy and I both thought she was crazy. There was no way you would be well enough to go home! As Wednesday progressed, you got better and better. You started reacting to those around you, instead of just sleeping. By Wednesday evening, both of your eyes were partially open. You also started nursing again that night! (Our roommates were also released that evening- whew!). When we woke up Thursday morning, I was amazed at what a difference one night had made. You had both eyes open (yeah!) and were starting to play with all the cords that were hooked to you. http://img.photobucket.com/albums/v426/sjcrmc/Emilys%20Surgery/4dayspostop11.jpgYou were very fascinated with the red light taped to your toe! It was really cute. Dr Wehby and Dr Wheatly came in that morning and said you were ready to go home! We were so excited and so nervous at the same time. It was kind of like bringing a newborn home- your so ready to leave the hospital and not have the nurses interrupt you, but so scared to be left alone with this baby- what if something goes wrong?!? We took you on a wagon ride around the pediatric unit that morning. You weren’t quite sure what to think of that. By Thursday afternoon, we had you packed and were ready to go home!
Once we had the car just outside of the hospital parking, you threw-up…everywhere! (Though that was the only time you threw-up). Once we got that cleaned up, we were on our way….It felt great to be bringing you home. It seemed amazing that just 4 days earlier we were driving to the hospital- scared to death of what was about to happen- and now- for the most part- it was OVER!
Once we got home, daddy went to go get your sisters so they could visit for a while- they were so happy to see you home. It was hard to keep their little hands off you. But Sarah was very aware that you had an owie on your head and wouldn’t let anyone touch it. She was quite the little protector for you…. Things went pretty smoothly once we were home. You still fought taking your medicine like crazy. One of us had to hold you tight and the other had to force the medicine down you. But besides that and a slightly different sleep schedule, it wasn’t too bad. Thinking back to that first week home, I remember thinking how hard it was, but currently, I can’t really think of what was so hard. About a week post-op, http://img.photobucket.com/albums/v426/sjcrmc/Emilys%20Surgery/BigSmiles11.jpgI remember you looking at me. It was the first time you really ‘looked’ at me. (Pre-surgery, it was weird; it was like you were looking through us, or just past us. I can’t really explain it, but I never felt that you were looking at me.) But when you really did ‘look’ at me. I was elated. That confirmed that the surgery was worth it. (Not that I didn’t know that before- but you looking into my eyes, gave me that immediate confirmation I needed.)
In the following weeks, you had a post-op appointment, which they confirmed that everything looked good. We also took you to a physical therapist to help with the slight head tilt you had. (Un-confirmed Torticollis) You hated the physical therapist. We didn’t get too far in those sessions. But mommy and daddy did the exercises with you at night, and by about 2 months post-op your tilt was pretty much gone. (It still shows up when you have a bad cold or are really tired ) I now think it’s cute though! We also took you to get your eyes checked in January- from what they could tell, everything looked good. In February we took you to your 3 month post-op appointment. Both Dr Wheatly and Dr Wehby said you had a perfect head and they couldn’t have asked for anything better. Both are pretty sure that by the time your 3, most all the asymmetry in your face will be gone. Things look good. Now your just about 10 months old. And life is just ‘normal’. You’re just like ever other 10 month old. No more extra worries (okay, I’ll always worry and I do look for things now that I never looked for before in your sisters…) . We’re just able to enjoy you.
We love you little Emily Grace! Looking back, I am so thankful for many things and many people. We were so lucky with this experience. I’m thankful for your pediatrician and the fact that she knew what craniosynostosis is and was able to act quickly. I’m also thankful that she referred us to Dr Wehby. I am so thankful for Dr. Wehby and Dr. Wheatly. We can never thank them enough. They do amazing work and are so good at what they do. What a scary job they have, to take an infants little head and do what they do. The staff at their office was so great and supportive. I’m thankful that craniosynostosis is ‘fixable’. That you are able to go on and live a long and healthy life. I’m thankful for the online friendships I’ve created while researching cranio. For all the knowledge and support the other mom’s gave me. It amazes me, how before you, I’d never heard of this, but after your diagnosis, I realized how many kids are out there with craniosynostosis. Mostly, I am thankful for you. You were a surprise from the beginning. You having cranio, was a surprise (to say the least). I am sure you are full of many more surprises for your daddy and I- and I am looking forward to them all! Thank you, Emily. Thank you for being such a strong and amazing little girl. You have gone through so much already, more than any child should have to go through, but you came out so much stronger and happier. Mostly though, I am thankful for you. Thank you for being in my life.
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I created this story as a letter to Emily, that way, when she is old enough, she can read the story as if I was telling it to her.....
Emily’s Craniosynostosis Story
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(Mommy’s point of view)
Okay, Miss Emily. Because you are too young to remember any of this (thank God!), I have decided to write it all down for you to read later in life. It’s been a rough first few months for you, but hopefully, as I am writing this, the worst is behind you……
When you were about 5 ½ weeks old, your daddy and I noticed a small bump on the left side of your forehead. We asked Sarah if she had happened to accidentally hit you or drop you without us knowing about it. (She was 4 ½ at the time.) She was adamant that nothing had happened, so we decided to call your pediatrician. Luckily, she wanted to see you right away. That Friday afternoon, me and your daddy took you in. Dr Susanne Purnell, looked you over and noticed that you did have some asymmetry in your face. (We had previously noticed that your left eye appeared to be a bit smaller than the other, but assumed it was just newborn squishiness. In fact I remember on the day you were born, I was looking down at you and I commented to your daddy that you did not have the same profile as your sisters…little did I know.) Dr Purnell immediately ordered an X-ray of your head. She explained to us that she believed you may have something called Craniosynostosis- which meant that one of your sutures (later confirmed to be the right coronal suture) had prematurely fused and would need to be fixed by means of surgery. At that point I believe I was in shock. Not my baby. Why would my baby have to go through something like that? I just didn’t understand. We proceeded to take you to get an X-ray. Daddy had to go in the room with you. I could hear you screaming from the other side of the door. I felt so bad for you, but was trying to be strong. After looking at the X-ray, Dr. Purnell was pretty sure it was right coronal cranio, but wanted to make sure. She sent us home and walked the x-ray across the street to one of the technicians at the hospital who then forwarded it to Dr. Wehby to confirm. I just cried on the way home. I had never heard of this before, but the thought of having to give you over to someone who was going to operate on you scared the crap out of me. Thank god for your daddy, I know he was scared too, but was being strong for me. Later that day we got a call from Dr Purnell advising us that yes, it was cranio, assured as that it was ‘fixable’ but that we would need surgery. She referred us to Dr Monica Wehby. As it was Friday afternoon at this point…we didn’t get much further. I believe every time I looked at you that day, I cried. Daddy finally told me that I couldn’t spend the next few weeks crying and that all was going to be okay. That was the last time I cried about it for awhile. We finally got an appointment with Dr Wehby in August. Prior to the appointment I had found some websites on cranio, so I had a bit more information and was a little bit more comfortable going into the doctor. When we initially met Dr Wehby, she just told us the facts. Your daughter has right coronal cranio. We will do surgery to correct it. We will make an incision along her hairline, pull the skin back, cut the skull here, remove this part, reshape the eye socket, reshape this part, put everything back and that’s how it’ll be. (She said it in more medical terms and not quite so bluntly- though she was very matter of fact, but that’s basically what I heard.) Dr Wehby is a very confident lady, who expects nothing but perfection from herself and those around her- she assured us that she wouldn’t finish the surgery until you were perfect. From there she sent us to the front desk to make an appointment for a CT scan and to schedule a surgery date. November 1st. At that point it seemed so far away. Yet as scary as the whole thing was, I wanted it done now, to get it over with. Dr Wehby wanted to perform surgery as close to 4 months as possible, but not a day sooner than four months old. You would be a little over 4 ½ months old on November 1st. We went to get your CT scan in early September. I was scared you would cry and they would need to sedate you, but luckily you fell asleep tight before they called us back and you slept through the whole thing. Later in September we also met with a second neurosurgeon at Dornbecher hospital. After meeting with her, we knew we were making the right choice with Dr Wehby. We then went back to Dr Wehby’s office to meet the plastic surgeon- Dr Wheatly. What a soft spoken guy. He so much added to our comfort level (not that we were ever completely comfortable with all of this.) We then set up an appointment to donate blood and have a pre-surgery appointment with Wehby and Wheatly. I think daily since we found out about the cranio I had been reading posts and making posts on 2 cranio boards I had found. They really helped me to see what the babies would look like out of surgery, to know that this is a bit more common than any of us knew and that everything should be alright. 2 weeks prior to surgery, daddy went to try to give blood. He had a horrid experience and the blood he donated was not able to be used as they didn’t get enough. I tried later that week to give blood, but my iron level was too low. We scheduled an appointment for the next Monday. I ate all the iron I could that weekend, but also had your Aunt Lib come to try to donate if I couldn’t. . Guess what, somehow, my iron level was lower- UGGG! I really wanted to be able to give the blood. No such luck. Your aunt was able to though (not that she was thrilled as she absolutely hates needles!). Last step down. One week to go before surgery.
With one week to go till surgery, I broke down. As I was nursing you Sunday morning, I just looked at you and sobbed. I was so scared for what you had to go through. We laid on the bed and played. I sobbed. Daddy called me on the phone (he and your sisters had gone out for the morning) and I broke down crying again. I kept looking at your little face, wondering how it would look. Realizing that even though one eye was bigger than the other, I loved that big wide eye. Part of my crying was because I was going to miss that eye and the face that I loved. It was a long day. The rest of the week flew by though. Friday morning (3 days before surgery) I tripped while I was going up the stairs (holding you). You had no scraps though, so we figured everything was fine. You were extremely fussy that day and the next though. Saturday night, we realized you weren’t really moving your leg, so Sunday morning (Halloween), we spent in the ER- turns out your femur was fractured! Due to your surgery the next day, your leg just got wrapped in a splint, instead of casting it. By the time we got home from the ER, it was time to get your sisters dressed for Halloween- so Sunday flew by! The anesthesiologist called us Sunday night to let us know that you could only have clear fluids after 4:00AM (which scared me a bit as your normal routine was to wake up and nurse at 4:30 and then again about 6:30AM) and then explained to us that you would have 3 IV’s- one in the neck, one in the arm and one in the leg. (Thank goodness he told me as I would have freaked seeing one in your neck!) He also explained that you would be put to sleep with the gas mask and then he would start everything…..Next thing I know; we are putting you in bed. We tried to wake you up at 3:30 to nurse you, you really weren’t having much of it, you nursed a bit, and then you were wide awake! I was scared to stay to near to you as I didn’t want you to cry because I couldn’t nurse you…. You were amazing though. So calm. Me, you and daddy went downstairs and sat for a while, and then you played in your swing while daddy and I just watched you. Oh, we were so scared for the coming hours.
You fell asleep downstairs on daddy’s lap around 5:00. We carefully put you in your car seat. Thankfully, you stayed asleep. Your grandparents arrived at the house about 5:20 (to watch your sisters) and we left for the hospital at 5:30. That was the longest and quietest 15 minute drive I think I’ve ever taken. Once at the hospital, we had to check in; the receptionist had us pick a teddy bear from this large pile of bears for you to have. When daddy picked up a little bear and the tag said her name was Hope, we knew that was the bear for you. After checking in, we went to a room with 2 cribs. One had your name on it. We were told to change you into your gown and wait for the nurse. We woke you up and changed you and then just waited. (Just typing this is bringing the emotions back.) We were so nervous. You were so calm though- I don’t think you’d ever been that calm and content. (Which again, I thank God for, because if you had been crying, it would have broke my heart even more!) The nurse arrived and you were weighed and measured. Then back to the room to wait for another nurse. http://img.photobucket.com/albums/v426/sjcrmc/Emilys%20Surgery/Waitingtogodowntosurgery211.jpgWe walked the halls a bit. Every time a nurse was in the hall, my heart would stop a bit. Your daddy did such an amazing job of keeping me calm. I saw a nurse come for the child across the hall and saw how they wheeled the bed to the elevator that went to the surgery area- a few tears slipped out at that point. Then it was our turn. In came the nurse to wheel your bed. I don’t remember if it was me or daddy that carried you to the elevator. We all got on this large steel elevator to go downstairs. We were then in a ‘surgery waiting room’ where all the patients wait for the surgeons. The anesthesiologist came in, introduced himself and explained that the surgery would last from beginning to end about 5 hours. It was your time. (Okay, now I’m crying as I type this.) They got a blanket from the warmer and wrapped you in it as I handed you to the nurse. Oh that was so hard. You again didn’t cry- it was like you, my 4 ½ month old baby was being strong for me. As you went through the doors, I did start crying. Another nurse got us some Kleenex and then walked us into the waiting room. The attendant there asked who our surgeon was, and when I said Dr Wehby, she advised me that she was the best neurosurgeon around and that you were in the safest of hands. That made me feel a bit better. Then it was just time to wait. And wait. Grammy and Jadge (your great-grandparents) arrived around 8:00AM- Grammy has a way of just sitting there and making your daddy calm, so I was very grateful they were there. Your Aunt Libby also came by for a bit. They helped make the time go by quicker. Every once in a while, the nurse would come by to update us on how you were doing. Never once was there a problem. All reports said you were doing well. It’s now almost 1:00- you should be almost done. At just after 1:00, I see Dr Wehby and Dr Wheatly walk into the waiting area- smiling! Just seeing them made me feel so much better. They explained that they were done, you had done really well and everything went as expected. (They talked a bit more, but I couldn’t even tell you what they said- all I knew is that you were okay!) It was indescribable the way I just felt this complete relief. I now understood the phrase “It’s like a weight was lifted off of you.” I just felt that weight, disappear (and also just then realized how much stress I had been feeling!)
We had to wait about a ½ hour for you to come out of recovery and then we could go with you up to the PICU. Just about 1:30 you were wheeled past the waiting room doors. You looked so good for what you had just gone through (I had previously had horrible images in my head- prepared for the worst!) After Grammy and Jadge saw you, they went back home. We went with you upstairs, where the nurse commented that you were a little fighter- you woke up in the recovery room screaming mad! And really didn’t want to take your medicine (you never got used to taking the medicine- screamed every time!) Once upstairs, we again had to wait outside while they got you set up in the PICU. After about 20 minutes we went to your room. You were asleep (medicated). http://img.photobucket.com/albums/v426/sjcrmc/Emilys%20Surgery/7hrspostopstitches3.jpgYour stitches looked amazing, so even, every one so precisely spaced and the same width. Hardly any of your hair was shaved- just enough to make the incision. Your forehead no longer had the lump or ‘bossing’ on the left side. You weren’t really swollen at this point. http://img.photobucket.com/albums/v426/sjcrmc/Emilys%20Surgery/2hrspostop-stitches11.jpgThat evening, my friend Nicole stopped in. It gave daddy a chance to walk away for a minute. At that time, they tried to give you medicine, but you wouldn’t calm down. You were screaming so hard. (With good reason!) One nurse came in and was finally able to calm you down by gently stroking is thumb along your forehead and just whispering to you. They then tried to give you your medicine (at this point you were getting some orally and some through the IV) and you screamed again, causing you to choke- at this point a few more nurses came in and started putting something down your throat- I had to step out of the room- I was now crying, again. Within seconds (though to me, it seemed to take forever) you were fine. I was back at your side. Later, when Dr Wehby was visiting, you started to fuss. I was telling you that it was okay, but not touching you. I just remember Dr Wehby grabbing my hand and putting it on your chest- telling me to touch you so you would know I was there, I wasn’t going to hurt you. (I’m not sure why I had been scared to touch you, but I was?) Daddy and I stayed there all night. I slept in a reclining chair. Daddy was in and out- either in the room with you or in the parent’s room, trying to sleep. You stayed in the PICU just the one night. http://img.photobucket.com/albums/v426/sjcrmc/Emilys%20Surgery/24hrspostop11.jpgLate Tuesday morning you were transferred to the regular PEDS unit. While we were happy to be out of the PICU, we were a bit scared as we were moving from having the nurse have only you as a patient and that could see you at all times to a room where the nurses each had up to four patients. We settled into the room and were happy that we weren’t sharing a room (at this point). Tuesday night your sisters and both sets of grandparents came to visit you. I was surprised at how unphased both Sarah (4 1/2yrs) and Reese (almost 2) were. They were very happy to see you, but also very distracted by the playroom they had passed on their way to your room. By the end of Tuesday, you were very swollen. http://img.photobucket.com/albums/v426/sjcrmc/Emilys%20Surgery/Swellingeyes11.jpgYou couldn’t open your eyes. Your ears were starting to fold over as your head was so swollen. When I would hold you, I just remember not believing how heavy your head was. You still had no interest in nursing or taking anything from a bottle. The nurses weren’t too worried as you were still getting fluids through your IV. Wednesday morning was a turning point. While I was taking a shower, Daddy rattled one of your toys for you and got you to smile a bit. When I got out of the shower, your left eye was starting to open. We were so happy to see that eye! http://img.photobucket.com/albums/v426/sjcrmc/Emilys%20Surgery/3dayspost-op11.jpgYour Auntie Libby and then Auntie Heidi & Evan visited you also. We also got roommates (ugg!- that made things a bit more crowded.) That afternoon, Dr Wehby told us you could probably go home on Thursday. Daddy and I both thought she was crazy. There was no way you would be well enough to go home! As Wednesday progressed, you got better and better. You started reacting to those around you, instead of just sleeping. By Wednesday evening, both of your eyes were partially open. You also started nursing again that night! (Our roommates were also released that evening- whew!). When we woke up Thursday morning, I was amazed at what a difference one night had made. You had both eyes open (yeah!) and were starting to play with all the cords that were hooked to you. http://img.photobucket.com/albums/v426/sjcrmc/Emilys%20Surgery/4dayspostop11.jpgYou were very fascinated with the red light taped to your toe! It was really cute. Dr Wehby and Dr Wheatly came in that morning and said you were ready to go home! We were so excited and so nervous at the same time. It was kind of like bringing a newborn home- your so ready to leave the hospital and not have the nurses interrupt you, but so scared to be left alone with this baby- what if something goes wrong?!? We took you on a wagon ride around the pediatric unit that morning. You weren’t quite sure what to think of that. By Thursday afternoon, we had you packed and were ready to go home!
Once we had the car just outside of the hospital parking, you threw-up…everywhere! (Though that was the only time you threw-up). Once we got that cleaned up, we were on our way….It felt great to be bringing you home. It seemed amazing that just 4 days earlier we were driving to the hospital- scared to death of what was about to happen- and now- for the most part- it was OVER!
Once we got home, daddy went to go get your sisters so they could visit for a while- they were so happy to see you home. It was hard to keep their little hands off you. But Sarah was very aware that you had an owie on your head and wouldn’t let anyone touch it. She was quite the little protector for you…. Things went pretty smoothly once we were home. You still fought taking your medicine like crazy. One of us had to hold you tight and the other had to force the medicine down you. But besides that and a slightly different sleep schedule, it wasn’t too bad. Thinking back to that first week home, I remember thinking how hard it was, but currently, I can’t really think of what was so hard. About a week post-op, http://img.photobucket.com/albums/v426/sjcrmc/Emilys%20Surgery/BigSmiles11.jpgI remember you looking at me. It was the first time you really ‘looked’ at me. (Pre-surgery, it was weird; it was like you were looking through us, or just past us. I can’t really explain it, but I never felt that you were looking at me.) But when you really did ‘look’ at me. I was elated. That confirmed that the surgery was worth it. (Not that I didn’t know that before- but you looking into my eyes, gave me that immediate confirmation I needed.)
In the following weeks, you had a post-op appointment, which they confirmed that everything looked good. We also took you to a physical therapist to help with the slight head tilt you had. (Un-confirmed Torticollis) You hated the physical therapist. We didn’t get too far in those sessions. But mommy and daddy did the exercises with you at night, and by about 2 months post-op your tilt was pretty much gone. (It still shows up when you have a bad cold or are really tired ) I now think it’s cute though! We also took you to get your eyes checked in January- from what they could tell, everything looked good. In February we took you to your 3 month post-op appointment. Both Dr Wheatly and Dr Wehby said you had a perfect head and they couldn’t have asked for anything better. Both are pretty sure that by the time your 3, most all the asymmetry in your face will be gone. Things look good. Now your just about 10 months old. And life is just ‘normal’. You’re just like ever other 10 month old. No more extra worries (okay, I’ll always worry and I do look for things now that I never looked for before in your sisters…) . We’re just able to enjoy you.
We love you little Emily Grace! Looking back, I am so thankful for many things and many people. We were so lucky with this experience. I’m thankful for your pediatrician and the fact that she knew what craniosynostosis is and was able to act quickly. I’m also thankful that she referred us to Dr Wehby. I am so thankful for Dr. Wehby and Dr. Wheatly. We can never thank them enough. They do amazing work and are so good at what they do. What a scary job they have, to take an infants little head and do what they do. The staff at their office was so great and supportive. I’m thankful that craniosynostosis is ‘fixable’. That you are able to go on and live a long and healthy life. I’m thankful for the online friendships I’ve created while researching cranio. For all the knowledge and support the other mom’s gave me. It amazes me, how before you, I’d never heard of this, but after your diagnosis, I realized how many kids are out there with craniosynostosis. Mostly, I am thankful for you. You were a surprise from the beginning. You having cranio, was a surprise (to say the least). I am sure you are full of many more surprises for your daddy and I- and I am looking forward to them all! Thank you, Emily. Thank you for being such a strong and amazing little girl. You have gone through so much already, more than any child should have to go through, but you came out so much stronger and happier. Mostly though, I am thankful for you. Thank you for being in my life.
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