maddysmom518
01-03-2008, 12:49 AM
Our beautiful daughter Madison was born last May. I was induced into labor after having a perfect pregnancy. I only threw up 3 times and only gained 8 pounds! She was already my miracle baby after having an unsuccessful pregnancy 10 years ago, when I was only 15, which ended at 5 months. Other than having an epidural that didn't work properly, labor was fine. I was induced that morning around 7:15 and she arrived at 4:38 that afternoon. My husband and I have never been so happy in all of our lives. She already had Daddy wrapped around her little finger. She was a perfect 7 pounds 4 ounces and was doing great. My doctor did scare me though. After the labor and delivery nurses took her from me to go to the warmer to clean her up, my doctor called my name and said the words "I'm sorry." As a nurse who previously worked in the labor and delivery unit, I was puzzled by his words. She was pink and screaming. What in the world could be wrong? His words were "She looks just like her daddy." After a good chuckle by everyone in the room, my husband and I enjoyed every minute of getting to know our daughter.
We immediately noticed that her left eye looked a little squinty compared to the right and that there was a little curve to her face. We assumed that it was just because of her position in utero. And that's what all of the medical professionals told us as well. It wasn't very noticeable, but of course her daddy and I just stared at her for hours on end, memorizing every detail.
About 2 weeks after she was born, I remember talking to my mom on the phone one evening while relaxing on the back deck with the baby. I guess it was just the hormones, but I noticed that the right side of my baby's head was flat above her right eye. Oh course I was freaking out. After all, my previous pregnancy was complicated with a form of spina bifida and hydrocephaly, so I was already scared to death that this child would have a simialar condition. After my mom calmed me down, I just put the thought that something could possibly be wrong with my child out of my head. On her 1 month appointment with the pediatrician, I mentioned it to the PA that was examining her. He went and got the MD because he "didn't see children that yound on a regular basis and wanted her opinion because he had never seen anything like that before." (We later found out he mostly saw the kids for their sick appointments, not well child visits.) The MD said that everything was okay and that she would grow out of it. So we were okay at that point.
Another month later, she was back in the office again for her 2 month old appointment. At this point, the PA (different than the first) noticed an odd shape to our daughter's head. And the flat spot above the right eye along with the curvature of the face was not improving. She gave us a brochure for a local company that does DOC banding for kids with plagiocephaly. After coming home and looking at their website, I was convinced that that was what was wrong with my daughter's head. The whole picture fit, except for the flattening abovet the eye. The banding company does evaluations for free, so at 3 months of age, she went to their office and was evaluated. Of course they said that she had positonal plagiocephaly and torticollis. They gave us some exercises to do with her to help the neck muscles. But they were "concerned" because this was not the typical form of the plagiocephaly that they see. They told us that we needed to see a neurosurgeon. Two days later, we were at the pediatrician's office for her 4 month old check up and shots and asked for the referral. A few weeks later, we had an appointment with the ped neurosurgeon. As soon as he walked in, he noted her left head tild (secondary to the tort), the facial asymetry...all the signs visible to a trained eye of coronal craniosynostosis. He really didn't much of an assessment. He just automatically wanted to send us for a 3D head CT.
The process of getting the CT was an adventure to say the least. They try not to sedated the babies if they can help it. So we were told to bring her to the radiology dept sleepy and a little hungery. We tried to do the scan, and to say that it was unsuccessful would be an understatement. We were sent to the lobby and told to feed her and let her go to sleep and we'd try to repeat the scan again with her asleep. That plan was working well until I tried to lay her on the CT table. She woke up and thought it was time to play. All of this happened on a Friday. So we worked it out that we would come back early Monday morning and have the CT done with anesthesia. While waiting on some of the paperwork to be done, she fell asleep in my arms. She probably could have had the scan done then without any problems. But we had to wake her up to give her the medicine to make her sleep. I know, makes a lot of sense to me too. Anyway, we were able to get the scan done without any problems this time. Her daddy and I were able to stand beside the scanner the whole 3-5 minutes that it took to have the scan completed. This really helped my husband. Since I'm a nurse that works in ICU, seeing a CT scan is a routine thing for me. I knew what to expect, but it's a whole new world when it's your child as the patient.
I picked up the scan results Tuesday morning before driving about 45 minutes to her follow up appointment with the neurosurgeon. Of course having a little bit of medical knowledge is a dangerous thing. I had already been doing a lot of research on the internet about craniosynostosis and had already made my diagnosis. I tried really really really hard to prepare my husband and mother for what I knew was coming. Our neurosurgeon gave us the diagnosis of right unilateral coronal craniosynostosis that afternoon. That's the minute that our lives turned upside down. I already had my list of questions ready for him. He asked if we had any questions, and then kind of rolled his eyes when I brought out my list from my purse. Of course, my first concern was pain management. Of all of the serious complications that could come from having the surgery including infection and death, my first concern was what are we going to do to keep her from hurting. I've seen way too much suffering in my profession to not be concerned by this. Anyway, the neurosurgeon said that he would immediatedly refer us to a plastic surgeon and schedule the surgery ASAP. He said that the surgery would be scheduled and that we would be worked into his office schedule to see him preoperatively.
Well another couple of weeks later, we've got the surgery scheduled. We're about as prepared as I think that we can be. We've started making out our list of things to be sure to pack for the hospital stay. We had our time planned to be out of work. Then one day, less than 2 weeks before our scheduled surgery day, I call and check the voice mail at home while I'm at work. There was a message from the plastic surgeons office telling us that we needed to call them back. The plastic surgeon had told us the Friday before when we went to the preop appointment that he would have to take a look at the CT scan and make sure that the bones of Madison's head were thick enough. If the bones aren't thick enough, the surgery would not have as good of an outcome if we could wait a few months and let her grow. Since it was now Thursday of the next week and we hadn't heard anything by now, we thought we were in the clear and the surgery would go on as previously planned. Now the plastic surgeons's office is telling me that after the plastic surgeon and the neurosurgeon spoke with each other the night before, they agree that she is too young and we have to postpone the surgery date for 2 months. What a blow that was. Our world changed again in that moment. Why can't we just get a plan and stick with it? Daddy and I were getting very stressed. I'm sure that it is a blessing that we wait another 2 months. She'll be 8 months old for the surgery now and our finances will be a little stronger. But it got to be a very frustrating event for us.
So ever since then, we've just been hanging out, waiting until Jan. 30. That's when she's scheduled for her bifrontal orbital advancement. I guess it would be different if I didn't have what medical knowledge I have. I take care of patients that have had craniectomies and have drains in their skulls. I actually had a patient last week that I got to talk the drain out and staple her head closed. It was a great thing for me to be able to do, until I thought about someone having to do that to my daughter. She's not going to be able to try to hit the nurse and curse at her like my 80+ female patient was able to do. She's just going to scream, not understanding why in the world these people are hurting her. How in the world are me and her daddy going to be able to take her hurt away? God, this is killing me!!!! The surgery is less than a month away now. I don't know how we're going to make it. I know we will, with God holding us up through the entire situation. He's done it so far.
Anyway, surgery is now scheduled for Wednesday, January 30 at 7:30 in the morning. Not letting her have anything to eat for 12 hours before that is not going to be fun, I'm sure. They've told us that she'll be in the PICU for the first night and as long as she's eating and drinking okay, that we can go out to the regular children's hospital the next day. We should expect her eyes to be swollen shut for about 4 days and be bruised for longer than that. Her drain should come out on post op day 2 or 3. Hopefully, we'll be home that Sunday. She already has an appointment the next Thursday to be casted/molded for the DOC band. I'm sure that will be another fun and interesting day!
Thank you all for listening to me vent. I feel a little better now. I'm ashamed to say that it's easier to share my feelings with a bunch of strangers than it is my husband and rest of my family. I guess it's because I can let my guard down on here and not have to try to hold everyone else up. I'm still in the mindset that I'm the nurse. I'm here to take care of everyone else. And I'm still doing that, but I need a little taking care of, too. Thank you for being there to do that in your small but very present ways. I'll keep everyone posted on how she's doing. Please keep Madison and our family in your prayers on January 30. We'll be sure to keep you in ours. God bless!
We immediately noticed that her left eye looked a little squinty compared to the right and that there was a little curve to her face. We assumed that it was just because of her position in utero. And that's what all of the medical professionals told us as well. It wasn't very noticeable, but of course her daddy and I just stared at her for hours on end, memorizing every detail.
About 2 weeks after she was born, I remember talking to my mom on the phone one evening while relaxing on the back deck with the baby. I guess it was just the hormones, but I noticed that the right side of my baby's head was flat above her right eye. Oh course I was freaking out. After all, my previous pregnancy was complicated with a form of spina bifida and hydrocephaly, so I was already scared to death that this child would have a simialar condition. After my mom calmed me down, I just put the thought that something could possibly be wrong with my child out of my head. On her 1 month appointment with the pediatrician, I mentioned it to the PA that was examining her. He went and got the MD because he "didn't see children that yound on a regular basis and wanted her opinion because he had never seen anything like that before." (We later found out he mostly saw the kids for their sick appointments, not well child visits.) The MD said that everything was okay and that she would grow out of it. So we were okay at that point.
Another month later, she was back in the office again for her 2 month old appointment. At this point, the PA (different than the first) noticed an odd shape to our daughter's head. And the flat spot above the right eye along with the curvature of the face was not improving. She gave us a brochure for a local company that does DOC banding for kids with plagiocephaly. After coming home and looking at their website, I was convinced that that was what was wrong with my daughter's head. The whole picture fit, except for the flattening abovet the eye. The banding company does evaluations for free, so at 3 months of age, she went to their office and was evaluated. Of course they said that she had positonal plagiocephaly and torticollis. They gave us some exercises to do with her to help the neck muscles. But they were "concerned" because this was not the typical form of the plagiocephaly that they see. They told us that we needed to see a neurosurgeon. Two days later, we were at the pediatrician's office for her 4 month old check up and shots and asked for the referral. A few weeks later, we had an appointment with the ped neurosurgeon. As soon as he walked in, he noted her left head tild (secondary to the tort), the facial asymetry...all the signs visible to a trained eye of coronal craniosynostosis. He really didn't much of an assessment. He just automatically wanted to send us for a 3D head CT.
The process of getting the CT was an adventure to say the least. They try not to sedated the babies if they can help it. So we were told to bring her to the radiology dept sleepy and a little hungery. We tried to do the scan, and to say that it was unsuccessful would be an understatement. We were sent to the lobby and told to feed her and let her go to sleep and we'd try to repeat the scan again with her asleep. That plan was working well until I tried to lay her on the CT table. She woke up and thought it was time to play. All of this happened on a Friday. So we worked it out that we would come back early Monday morning and have the CT done with anesthesia. While waiting on some of the paperwork to be done, she fell asleep in my arms. She probably could have had the scan done then without any problems. But we had to wake her up to give her the medicine to make her sleep. I know, makes a lot of sense to me too. Anyway, we were able to get the scan done without any problems this time. Her daddy and I were able to stand beside the scanner the whole 3-5 minutes that it took to have the scan completed. This really helped my husband. Since I'm a nurse that works in ICU, seeing a CT scan is a routine thing for me. I knew what to expect, but it's a whole new world when it's your child as the patient.
I picked up the scan results Tuesday morning before driving about 45 minutes to her follow up appointment with the neurosurgeon. Of course having a little bit of medical knowledge is a dangerous thing. I had already been doing a lot of research on the internet about craniosynostosis and had already made my diagnosis. I tried really really really hard to prepare my husband and mother for what I knew was coming. Our neurosurgeon gave us the diagnosis of right unilateral coronal craniosynostosis that afternoon. That's the minute that our lives turned upside down. I already had my list of questions ready for him. He asked if we had any questions, and then kind of rolled his eyes when I brought out my list from my purse. Of course, my first concern was pain management. Of all of the serious complications that could come from having the surgery including infection and death, my first concern was what are we going to do to keep her from hurting. I've seen way too much suffering in my profession to not be concerned by this. Anyway, the neurosurgeon said that he would immediatedly refer us to a plastic surgeon and schedule the surgery ASAP. He said that the surgery would be scheduled and that we would be worked into his office schedule to see him preoperatively.
Well another couple of weeks later, we've got the surgery scheduled. We're about as prepared as I think that we can be. We've started making out our list of things to be sure to pack for the hospital stay. We had our time planned to be out of work. Then one day, less than 2 weeks before our scheduled surgery day, I call and check the voice mail at home while I'm at work. There was a message from the plastic surgeons office telling us that we needed to call them back. The plastic surgeon had told us the Friday before when we went to the preop appointment that he would have to take a look at the CT scan and make sure that the bones of Madison's head were thick enough. If the bones aren't thick enough, the surgery would not have as good of an outcome if we could wait a few months and let her grow. Since it was now Thursday of the next week and we hadn't heard anything by now, we thought we were in the clear and the surgery would go on as previously planned. Now the plastic surgeons's office is telling me that after the plastic surgeon and the neurosurgeon spoke with each other the night before, they agree that she is too young and we have to postpone the surgery date for 2 months. What a blow that was. Our world changed again in that moment. Why can't we just get a plan and stick with it? Daddy and I were getting very stressed. I'm sure that it is a blessing that we wait another 2 months. She'll be 8 months old for the surgery now and our finances will be a little stronger. But it got to be a very frustrating event for us.
So ever since then, we've just been hanging out, waiting until Jan. 30. That's when she's scheduled for her bifrontal orbital advancement. I guess it would be different if I didn't have what medical knowledge I have. I take care of patients that have had craniectomies and have drains in their skulls. I actually had a patient last week that I got to talk the drain out and staple her head closed. It was a great thing for me to be able to do, until I thought about someone having to do that to my daughter. She's not going to be able to try to hit the nurse and curse at her like my 80+ female patient was able to do. She's just going to scream, not understanding why in the world these people are hurting her. How in the world are me and her daddy going to be able to take her hurt away? God, this is killing me!!!! The surgery is less than a month away now. I don't know how we're going to make it. I know we will, with God holding us up through the entire situation. He's done it so far.
Anyway, surgery is now scheduled for Wednesday, January 30 at 7:30 in the morning. Not letting her have anything to eat for 12 hours before that is not going to be fun, I'm sure. They've told us that she'll be in the PICU for the first night and as long as she's eating and drinking okay, that we can go out to the regular children's hospital the next day. We should expect her eyes to be swollen shut for about 4 days and be bruised for longer than that. Her drain should come out on post op day 2 or 3. Hopefully, we'll be home that Sunday. She already has an appointment the next Thursday to be casted/molded for the DOC band. I'm sure that will be another fun and interesting day!
Thank you all for listening to me vent. I feel a little better now. I'm ashamed to say that it's easier to share my feelings with a bunch of strangers than it is my husband and rest of my family. I guess it's because I can let my guard down on here and not have to try to hold everyone else up. I'm still in the mindset that I'm the nurse. I'm here to take care of everyone else. And I'm still doing that, but I need a little taking care of, too. Thank you for being there to do that in your small but very present ways. I'll keep everyone posted on how she's doing. Please keep Madison and our family in your prayers on January 30. We'll be sure to keep you in ours. God bless!