Andrew's story thus far
Andrew was born 8/11/07 (his daddy's 39th birthday). The pregnancy was hard on me, but I was constantly told that my baby was doing great.
I found out I was pregnant three days after conception in late November of '06. I was in a lot of pain in my lower right abdomen. I made a Dr.'s appointment that day. We had been trying to conceive for a while. Something told me to take a HPT before the appointment. I wanted to make sure I wasn't pregnant before they did any xrays or anything. I expected it to be negative just like all the other tests I had taken in the previous months. Wrong! We were pregnant. I was now even more worried.
The Dr. confirmed the pregnancy but he was very concerned with the pain. He sent me for some blood work and and emergency ultrasound. They were able to squeeze me in at a clinic near my house so that was where I chose to go. I drank all my required water which cause me to be in even more pain. When I got to the clinic I was in tears and doubled over. They refused to do the ultra sound because they could not get the results back fast enough. Everyone was concerned that this was an ectopic pregnancy and my tube was about to burst. They told my husband to rush me to the E.R. They did the ultrasound there. It was too early to tell anything. The blood work showed that I was only a few days pregnant. There wasn't even a bump in my uterus or my tubes. They did not know what was causing the pain, but they assumed the embryo was in my tubes. They gave me a 30% chance of being able to keep the baby. A few weeks, a ton of pain, and several ultra sounds later it was confirmed that the baby was not in my tube, but they still felt I was losing the baby. They thought that either my body was attacking it or the pain itself would cause my uterus to contract and shed the embryo. This continued throughout the entire pregnancy.
Skip to 38 weeks and 6 days pregnant.... I wake up to my water 'leaking' and off to the hospital we go. All we could think about was meeting our beautiful baby boy or girl. Labor came on fast. I was 2cm when we arrived at the hospital and my contractions were 6 minutes apart. We stalled for a while because I had scar tissue in my cervix from a previous cervical surgery. Next thing I knew I was 7cm. The Drs started to act worried. They kept losing the baby's heartbeat. After a physical exam they decided his head was turned. He was stuck in the birth canal. They inserted a monitor into his head and I had to lay on my side to get him to turn. A C-section was being seriously considered by everyone except me. After another exam and 2 1/2 hours of pushing it was determined that he was too far in to the birth canal to do a C-section, but his head was sideways in my cervix. It took a vacuum and forceps to get him out, but it was all worth it. Our beautiful baby boy was finally here. We noticed the ridge on his forehead right away, but thought nothing of it.
Once he was home, I remember looking at the top of his head and thinking that it was not round, but still I thought nothing of it. I just figured that not all babies have perfectly round heads. I never thought it would be a problem.
At his two month well visit a nurse mentioned something about his forehead having a point to it. Still I did not realize this was a "big deal." Then his pedi came in to do his exam. At the end of the exam he mentioned something about metopic something or other and said it was probably nothing, but we should get an x-ray to make sure his skull was OK. He insisted that I take Andrew to the hospital to get the films done and not a clinic because the films would be read faster that way. Oddly, I still did not panic. I guess it was because the Dr was so calm about the whole thing. Little did I know our entire world was about to be flipped upside down.
A few days later his pedi called me. He said that the radiologist said that the suture appeared to be open and that it may be starting to close at one end. I thought this was good news. Then the pedi said that he thought we should see a specialist at Detroit Children's Hospital "just in case." He handled the situation so well that I thought he was just being over thorough because he knew my brother. (Our pedi did his internship at the hospital where my brother has been a Senior Respiratory Therapist for 20 years) I still was not too worried. The pedi was saying that there appeared to be nothing wrong, but pushing pretty hard for us to hurry and make the PS appointment. It was hard for me to explain this to my husband. "Yes dear, the x-rays say everything is fine, but we have to go spend more money and see a specialist in downtown Detroit. He said it is fine, but he was pushing very, very hard that we do this quickly. I guess he really doesn't want to be wrong about Joe's litter sister's baby. That's cool."
Then came the appointment. I remember walking into that office with my perfect looking little baby and seeing all these babies who were either swollen from a surgery or who had some serious looking deformities. I just thought to myself that it was so stupid that we were wasting our time and money with this appointment. We get in our room and see the PS. I tell her why we were there and that the x-rays showed that there was no closure of the suture. She said that she did not need an x-ray to see that my son had metopic synostosis. She took out the films and then read the radiologist's report. Then she ripped the report into pieces and said that the radiologist was very wrong. My head was spinning. My son, his skull, his brain.....WHAT? What was this lady telling me? Then she said the words I never thought I would hear.... "he needs surgery to correct this problem." HUH? Surgery? For what? My husband and I both were tearing up. Then she explained the surgery and that he would be in a helmet for 6 months after. For whatever reason, that was our breaking point. Our baby in a helmet for 6 months. That one thing emotionally put us over the edge. I think it was because we knew that surgery was a SLIGHT possibility in the back of our minds, but the idea of our baby in a helmet was something we had no idea he would need.
She sent us for a CT scan, but said it was only to have a road map for surgery. She was 110% sure that it would only confirm her diagnosis.
We walked out of that office in a head spin. I did not know what was up or down. When we got home all I could do was hold Andrew and cry. Every time I looked at him I would cry. I had to do something. I had to know more. I needed facts and statistics. I was not about to just take the word of this Dr just because she was a Dr, especially when I had a radiologist report saying nothing was wrong with my baby. How can this person who is paid to read x-rays be so wrong about what he saw? I went online and searched until I could not see straight. Eventually I found CAPPSKIDS. I found some answers there, but I wanted, no needed, more. I needed statistics. I was so lost. Someone over there told me about CK. I would post on both boards and wait for answers. Some would come, some questions just could not be answered, but I realized that I was not alone. Finally people understood what I was saying and how I felt.
We had the CT done and saw the NS the same day. He agreed with the PS and also explained the surgery. I had pages of questions, most of which he could not answer. He just kept telling me to ask the PS. I was getting very angry and Andrew was screaming from a reaction tho the Chloral Hydrate they gave him to sedate him for the CT. I left there more confused than ever. My husband and I were leaning toward not doing surgery. We both agreed that we were not going to cut our beautiful boy because of how he might look when he got older. What made things even worse was that the PS made mention that I look as if I may have had the same thing happen to me as a baby. All I could think, and still can not get out of my head is, "if I had this issue, no one told my mom and I turned out just fine and my head does not look a bit deformed. Why should I think my son will be any different?"
We made another appointment with the PS. She told us about the CT. She did not say anything different than the NS said. I was not even sure why we were there. We only went to get my questions answered anyway. When I started to ask my list of questions, the PS seemed very annoyed. She could not give me exact answers to a lot of my questions. (remembering I wanted to know statistics and some of them just don't exist) The thing that put me over the edge was that I caught her trying to 'double talk' her way out of some of the questions she did not have answers to. I had already been considering getting a second opinion, but I was going to have to fight my insurance company to get it. When I told her I was considering going to U of M MOTT, she seemed offend. I knew I had to do something, because even with my brother working in the PICU and NICU of this hospital, I just was not having any good feelings about this surgery or this Dr.
My husband basically put everything in my hands. All the decisions were mine. I needed more answers and took everyone's advice. I fought my insurance company and got the second opinion. We met with Dr. Buchman at U of M and felt so much more at ease. He even took the time to chat with Andrew who was a talkative 4 month old. All of a sudden I was getting some of those answers and statistics I was looking for. As much as I did not want to put my son through surgery, I felt comfortable with this Dr and new it was the right thing to do. My husband and I decided right there in his office that we were going to have surgery at U of M. We met with the NS, Dr. Muraszko, and felt comfortable with her as well. They prefer to perform the CVR surgery between 9 and 12 months of age, so the long wait was about to begin.
Now I had to fight the insurance company again. Everyone told me it would never happen, but it did. I got copies of all of his records. The CT scan showed a possible cyst on Andrew's brain. No one told me about this at Detroit Children's. Dr. Muraszko feels it is fluid being pushed to one side from the skull formation. This was one point that I used to get the approval to go to U of M. The other was a blessing in disguise. Andrew had terrible reflux. Detroit did the CVR at 6 months of age. Waiting for his tummy to get better before doing surgery could actually save the insurance company money. Andrew's gastro Dr made a point of saying that there was a high risk of Andrew's tummy getting worse due to the long sedation time if we did the surgery while Andrew was so bad off. Waiting was only a plus for his tummy. The wait would stink for mom and dad, but could be good for baby. I got the approval and surgery at U of M and it was scheduled for June 25th. Since then it has been moved up to June 18th. I think I change my mind every week. Now that surgery is 17 days away, I change it every day. Do surgery, don't do surgery? It is the most difficult decision I have ever made. I have been so emotionally wasted that I had to get help. Thank God for Zoloft. It has helped me so much. I got to a point where all I did was cry every time I looked at my son. I could not "connect" with him any more. I think I was so sure I was going to lose him that I decided that if I shut down it would not hurt so much. I lost so much time with him because of that. I wish I could get that time back, but I can't. Now I just have to get through the next 2 weeks.
My husband and I fight constantly over this. I am only doing this for Andrew because of that fluid that is being pinched. I know that can only get worse and who knows what the results of that would be. As of right now Andrew is fine. He has had neuropsychological testing. He is very advanced in speech and cognitive thinking, but is behind in fine and gross motor skills. He is going to have a physical therapy evaluation in August through our school district and will probably have to do some therapy. I can live with that. Scott has a huge problem with it because he believes there is nothing wrong with his baby and still doesn't understand why we should do surgery since he "looks fine." (thus the constant arguing) He is a happy, healthy, teething, babbling, laughing 9 1/2 month old who is about to undergo something I can not possibly explain to him. I just keep telling myself that he will not remember a thing and that I can not take the chance of not having this 'fixed' for him. The other side is so close and yet still so far away. There are moments when I get so scared I can not breathe. Everyday gets harder, but we are getting through them. It seems like just yesterday that I was complaining that this surgery was 6 months away. I have done all I can to do what is right for this baby. His stomach is so much better than it was 4 months ago, so waiting was the right thing to do. All I can do is pray that we are doing the right thing and that he will be the same baby on the inside when all of this is said and done.
For all of you who have made it to the end of this novel, I hope our story can help in some way. I thought about editing it to be shorter, but I would not know what to take out. This is our story. There is no editing it. It has been a hard road both physically and emotionally. To edit it down would not do it justice. Now we all just have to wait and see how this story ends. Happily ever after never sounded as good as it does right now. All I can do is pray!
added on after surgery.....
So here we are 2 1/2 months post op. I am still not sure we made the right decision, but I know we made our decision with Andrew's best interest at heart.
Andrew surprised all the surgeons he came through with flying colors. He even beat the odds and did not need a blood transfusion. Surgery was on Wednesday. His eyes swelled shut at 9:12am on Thursday. He opened his eyes at 1:45am Sunday morning. I am not sure which was more thrilling for mommy, seeing those eyes and that smile or seeing him for the first time the day he was born. I cried like you would not believe. I think I called and woke up every person I knew. Of course he was not about to go back to sleep after not being able to see for so long so walking the hospital we went. I was never so happy to be walking the halls of a hospital at 2am in my life. he could not stop smiling and waving at people. He was so happy. They tell us that he actually had minimal swelling. They can not believe how fast he recovered or how good he looked upon discharge. All the nurses swear that he looked more like 4 months post op than 4 days. My only fear with that is that the soft tissue is pulling the bone back into its old shape too quickly. Our surgeon uses a method of overcorrection because the tissue will pull the bone back a bit with time. With him "looking so great" now, I am worried that he will start to have issues again in a year or so. They say he will look "square for a year to 18 months post op. We are 2 1/2 months out and one side looks completely normal and the other side does not look anywhere near as "square as it should." This is a great thing for the moment, but my mommy brain is working overtime to think about the future. Hopefully I am just in worry wort mode and my little trooper is just a super fast healer. ;)
He was in the PCU for 2 nights, but only because there was not a room available on the regular floor. He was moved to the regular unit on Friday and discharged on Sunday.
His eating was fine for the first 2 days post op, then things got bad. He was not very interested in food, even when we brought him home. He didn't start vomiting until about day 3. He ate like a champ right away... and I mean right away! They gave him Pedialyte and Cheerios in recovery and he drank every last drop and then some and ate every crumb of the Cheerios. They warned me that it might all come back up, but my little vacuum kept it all down. After a couple of days he would not eat or drink anything. I finally got him to drink an ounce or two here and there of an apple juice and Pedialyte combo, but it usually came back up. To this day I can not say for sure if it was his stomach just acting up from all the IV meds or if it was a reaction to the Tylenol 3 I stopped the T3 as soon as we got him home and stuck with our usual combo of Motrin and regular Tylenol which worked fine. It took over a month for his eating habits to get back to normal. His reflux is back, but not bad. He has bouts from certain foods and when he plays too hard after eating. It is not that bad, but it stinks considering he was showing no signs of reflux for over a month before surgery.
The reason I wonder if we made the right decision is based on his personality. He is not the same baby as he was preop. We were blessed with this amazingly happy, independent baby who would laugh even when we knew he was in a ton of pain. Now I have this baby who cries at every little thing, who doesn't laugh as much, and who will not leave my side for even a second. He is so needy I have 0 time to myself. I know that is a possible sacrifice of motherhood and I would not be so upset if this were how he was before surgery. He is a little better now than he was immediately after surgery, but still a million miles from his old self. This was a huge fear of ours before surgery. Our fears were as follows: (in this order)
will he live through surgery
will he be able to function as a normal child
will he be able to see
will his personality change (we knew he was too good to be true)
will he look "normal"
I still have hope that in time his personality will return to what it once was. I want him to be super happy and independent for both him and I.
As far as the hospital goes, I have serious regrets. I loved our team, but I do not know if I would ever take him back to that hospital for anything else. The amount of extra pain he went through and extra stress we went through was completely uncalled for. I have posted about this before so I am going to skip the details here. If you want details you can PM me and I will gladly will you in.
Andrew has started to catch up with his gross motor skills. This started to happen immediately after surgery. I find it hard to believe that was a coincidence. He is now walking and stumbling all over the house. He had his PT evaluation. They want to wait and track him for a few months and then make a decision. They did feel that he is still quite a bit behind in his fine motor skills, but I am working on that with him so hopefully we will get that back on track soon.
He still has an issue with is left eye. His tear duct is still blocked. The Dr was hoping that it would correct itself once the skull was reshaped, but no luck. We have one more month to try to free it up with massage. If it doesn't clear up he will have to have minor surgery to take care of it. He has already had conjunctivitis once, so we need to get this taken care of for him.
As you can see in the picture below, his hair is starting to cover his scar and he has very little swelling left. He does have the usual bumps and divots that I have learned not to worry much about from the Drs and the other parents on CK.
he has fallen a few times and bumped his head pretty hard. It scares the hell out of me, but he is a toddler and he is going to bump his head. The first time it happens after surgery is the worst! Once he stopped crying, mommy started.
Hopefully our story helps someone else get through this diagnosis and also lets you know that you are not alone in your trials and fears. Thanks for reading our story! If you have any questions please feel free to send me a PM. I will be happy to offer any advice I can.
added 3 years post op...
So much has changes with us that I felt like I should update again.
After much time passing and going through surgery at another hospital with my baby girl, I have to readdress my comments about U of M. There were some things that could and should have been done better there regarding Andrew, but after seeing how bad things can be, U of M really was not that bad. I think my expectations and stress made everything seem mush worse than it really was. I would handle things differently, but I would take him back there again if needed. Heck, at one point during my daughter's emergency I found myself begging to be transferred to U of M out of Beaumont. I was upset, they did screw some things up pretty bad, and they did cause Andrew some unnecessary pain, but I after what I went through with Cheyenne, I know it could have been worse. Not that this is a very comforting thought, but my point is simply that no hospital is perfect and there will always be staff screw ups. Now that I am sadly more experienced in hospital staff and procedures I think I could have helped to avoid some of the issue we faced.
With that out of the way, let me get to the important facts..... Andrew is doing great. His head is still a bit bigger than other kids' his age, but he is growing into it. The size is not as obvious as it once was and I feel confident that it will be proportionate to his body when he gets a little older.
He has some small fine and gross motor skills issues, but it is nothing that a little extra help will not fix. I am in the process of fighting for that help with the local school district now. I know he is a bit behind with fine motor skills, the gross motor issues could just be that I have a clumsy kid.
He has some speech articulation issues also. We recently found out that he has a mild bi-fed uvula. That means the dangling thing in the back of the throat is split mildly like a snakes tongue. This could be affecting his articulation. He has the intelligence level of a 6 year old and talks like an adult. They suspect him to have a photographic memory. He is one amazing little boy.
On the down side, he is every bit of 3 (going on 4) years old. He is a walking tantrum. I do often wonder if some of his issues are related to the cranio. I think I am going to wait another year and see if he grows out of this stage. I might change my mind though. My feelings on that depend on how bad the day has been.
I feel pretty certain that he will need surgery to fill in his soft spots in a couple of years simply because they are still so big. I do not think they have changed at all since surgery. I hope I am wrong, but it will not be a surprise if they tell me this.
His tear duct is still blocked, or he does not have one in that eye, we still do not know. We have opted not to have surgery on it just to explore it because it is better than it was. He had 4 bouts with conjunctivitis in it, but has not had it for over a year now. The eye still tears all of the time, but that is the only issue now. If he has to have surgery on anything else we will coordinate with the ophthalmologist and have the duct checked at the same time.
Over all, we have some issues over and above the average kid, but nothing so spectacular that I am overly concerned. I think most of his issues can be easily corrected with just a little extra help. Do I still regret going through with surgery? Honestly, on most days I do not. It actually scares me when I think about how he might be had we not done the surgery. I look at his old pics and wonder how he would look now and how that little pinched brain would be. Would he be the same overly smart and incredibly annoying little boy I love today? I am not going to lie though. There is the occasional bad day when I wonder if I should have just left what God gave me alone. The more time that goes by the less I think that way. I spent a lot of time wondering why us and why we had to go through all of this, and why my baby. At one point I decided I would never know the answer to that. Then our daughter was born and we found ourselves in a tailspin. She needed emergency surgery the day after she was born and again at 4 months of age. We almost lost her that time. Had I not gone through all we did with Andrew I would not have been able to handle her problems, and I don't think I would have gotten her to the hospital as soon as I did when she had her hernia, which means we very likely could have lost her. Everything I learned through Andrew's surgery and hospital stay helped me know when to stay calm and when to fight the doctors with her issues. It was like the minute they took her in for her first surgery a switch went off in my head. I knew why it had happened to us. We were chosen to be strong and do the right thing for Andrew, and he was the reason we could be strong for our daughter. Without Andrew and his cranio there might no longer be a Cheyenne.
It feels weird to say that we are just about 3 years post op, and as I am writing this I find myself wondering if I will be updating again in another 2 or 3 years when he is in school. I remember when I could not see the future for him beyond that surgery date and here I am thinking about him starting school. I thought our lives would never be normal again and yet they are. So, for all of you just beginning this journey who find yourself wondering "why" or thinking you will not make it to that surgery date, you will. It will be the hardest thing in your life, but you will get through it and you will get past it. There is a light at the end of the tunnel and your child is going to amaze you more and more every day in the years after surgery and then some!
Metopic
