Easter Bunny

Happy Easter!

Love,

Ben

Dallas Day Trip

Ben and I made it to and from Dallas yesterday without a hitch! I was so nervous about making it through security by myself, but it ended up going smoothly. Ben enjoyed his first plane ride- even though he slept most of the time.

We left our house at 5:40 a.m., which I thought would be awful, but it worked out just fine. We made it to Dallas at 8 a.m. and back home by 4 p.m. We rented a car and I drove us all over Dallas. I am learning my way around Dallas quite well!

His helmet appointment was much shorter this week, thank goodness. His ear opening was cut to be a little bit bigger, and they moved the pads inside his helmet. The helmet technician had me feel Ben's head where to pads were and I could feel on his skull little indentions. These will all even out, it just goes to show how fast his head is growing; last week the pads were barely touching his hair, and five days later they caused indentions. We don't go back for two weeks, so I am sure we will be ready for an adjustment.

After his helmet appointment we had an appointment with Dr. Genecov. We were able to get in and out of his office in less than 30 minutes- pretty impressive! Dr. Genecov said that Ben's incisions look great, and that everything is going as planned. He wants to see us back every time we have a helmet appointment so he can make sure the shape is being corrected properly. This is a bit of a scheduling hassle, but we want to make sure we are getting the best results out of helmet therapy.

There are several syndromes that go along with Craniosynostosis. Ben does not have any other symptoms of any of the syndromes, but we wanted to have him tested just to be on top of things. During Ben's surgery, a blood sample was taken and sent for genetic testing. We received the report yesterday from Dr. Genecov and Ben has 3 abnormalities. Dr. Genecov is not qualified to interpret the report so we are setting up an appointment with a geneticist to discuss the abnormalities. We are not too concerned at the moment, based on what little we could decipher from the report. It is just one more thing to worry about and wait on an answer. Hopefully we can get answers soon!

We will be going back every two weeks, which is much better than every week! Flying down, renting a car and flying back really wasn't too bad. I can handle it every other week.

Ben is now wearing his helmet 23 hours per day! He has done so well adjusting! He has not had any problems sleeping in it or anything. I am certain that it bothers me much more than it bothers him. I miss being able to kiss his head and play with his beautiful hair! I will just have to take full advantage of the hour-a-day I get without his helmet. Yesterday was also my first time with him in public in his helmet. Only one person asked me why he had a helmet, and I didn't catch any stares like I was anticipating. The only thing I noticed was that I didn't get a single red-head comment, which is a real rarity (his hair looks much darker in the helmet because it gets all sweaty).

That is my weekly update! Ben is doing great, and we couldn't be happier! Thank you again for all of the love, prayers and support. We are so blessed!

Helmet Time

It has been more than two weeks since Ben's surgery, so now it is time to start helmet therapy. My mom, all three boys and I went to Dallas for a Spring Break trip, with the main objective of getting Ben's helmet. We managed to get in a little bit of shopping too!

We picked up Ben's helmet yesterday, which was a much more complicated process than I had anticipated. The helmet was made just for Ben, based on the measurements they took when his head was scanned two weeks ago. They put the helmet on him and then made various adjustments to make sure it fits properly. Getting the right fit is a long trial and error process-our appointment lasted almost two hours.

Ben's helmet is clear so that we can keep an eye on his incisions, which are healing wonderfully. I am glad it is clear because we can still see all of his pretty red hair!

Ben will be "breaking in" his helmet over the next five days. Today he is supposed to wear it for one hour followed by a one-hour break, then repeat. The time he wears it will increase each day until he is wearing it 23-hours per day. He will have his first nap in his helmet on Sunday, and sleep in it all night Monday night.

So far, it has not bothered Ben at all, except for when I pick him up- he shrieks just for a second. I think it might pinch his little neck. He has been very happy in it, and we had our first helmet photo session. I think he has to be the cutest kid in a helmet ever! I think it will be harder for me to adjust to the helmet than for him.

Ben and I are flying back to Dallas on Tuesday for a helmet adjustment and an appointment with Dr. Genecov. It will be our first flying-solo adventure. I am a bit nervous about getting through security alone, but we will get the hang of it after a time or two. After that, we will have a two-week break until we have to go back.

On a side-note: I read an article detailing the procedure similar to Ben's. Click here to read it. There were a few differences, but it a good, detailed description for those of you who are interested.

One Week Post-Op

It has been a week since Ben's surgery, and it is simply amazing how fast he recovered! He is 100% back to himself. He is on his normal schedule, and is such a happy little guy. You would never know that he had his skull cut open just a week ago. We could not be any happier with the decision we made to go with the less invasive procedure.

Ben has not needed any pain medicine since we have been home, and he just finished up his antibiotic. All we have to do is shampoo his head every day for three weeks to keep his incisions clean. His stitches are all disolveable. It is amazing how easy the upkeep has been.

I think the past week has been much harder on J.P. and I than it has on Ben. We were both exhausted from our time in Dallas, and there is no time to be tired with 2 toddlers around! We are slowly recovering, and Ben has been so kind to let us sleep all night.

One of the hardest things has been protecting Ben's precious little head. Ben has a huge soft-spot on top of his head, and two crazy brothers running around. I can't lay him on his play mat or in his bouncy chair if they are awake, which makes it pretty hard to get things done around the house. I never thought I would say this, but it will be kind of nice once he has his helmet!

I am going to Dallas with my mom and all three boys next week. We are making a little trip out of going to get Ben's helmet. I think Jack and Luke will probably want to get helmets too! Since I will be doing lots of flying back and forth, it will be nice to have a fun trip in there too.

I honestly can't thank everyone enough for all of the prayers, support, and kind gestures! The meals have been especially helpful in this last week. Thank you to all of the wonderful Marquette parents who make goody bags for Jack and Luke, and who setup a 742-DINE account for us. We are so blessed to be surrounded by such wonderful, thoughtful people!

I wanted to include a few post-op pics of Ben's head. The shape has already changed a little bit, but the real difference will be seen after helmet therapy.

We're Home!

We are so happy to be home! It feels like an enormous weight has been lifted from my shoulders. I do not have to worry about surgery anymore! It is a wonderful feeling.

Ben and I both slept pretty well Thursday night. He didn't even wake up when the nurse came in with the blood pressure cuff in the middle of the night. We both woke up feeling good and ready to go home. Ben thought it was hilarious to rip the monitors off his chest. We took it as a sign he was ready to get out of there! Dr. Weprin and Dr. Genecov's fellow came by and they both said he looked great and that we could go home. Yippee!!

Ben was the biggest hit at the hospital! Lauren, our nurse in the PICU, said he was the cutest kid she had ever seen, aside from her own. Our nurse yesterday morning took him out and showed him off to all the other nurses. Everyone who came in our room said "I heard about his red hair!"

We were discharged at 11:30am yesterday. Star Cranial was able to squeeze us in for an appointment in the afternoon, so we won't have to fly back on Monday as originally planned. Ben was scanned for his helmet. They have a special machine with 4 lasers and 10 cameras which measure all of the dimensions of Ben's head in 1.5 seconds. All of the data is uploaded to their computer so they can custom-build his helmet. He had to wear a funny little cap while this was done, and he looked so silly! We will go back on March 18 to get his helmet.

We made it out of Dallas, after battling traffic, and home by about 8:30 last night. Ben slept almost the entire way home and then slept through the night. He really is the best baby in the whole world! All of the nurses said his schedule would be off for a few weeks, but he is back in his normal routine. I am amazed!

We feel so relieved to have all of this behind us. We can't believe how many people were praying for Ben this week, and we are so grateful!

Day 2

We were moved to the pediatric floor at about noon today. We were so excited to move on, because it meant being closer to getting out of here. We quickly realized how wonderful the PICU is- one nurse for every two patients is very nice! We have to be much more independent in here. Luckily, Ben has most of his lines removed, so he is much easier to handle.

We were hoping to get out of here this evening, but because Ben had a blood transfusion they want us to stay until tomorrow. They will check his blood work early in the morning, and if everything looks normal they will give his head a good scrub and send us on our way. Keep your fingers crossed!

Ben is doing amazingly well. He has been smiling, talking and just hanging out. He still fusses a little more than normal, but he really is a pretty happy kid. He does not have much swelling, if any, and no bruising. After he gets his hair washed you probably won't even be able to tell he has scars. Amazing!

J.P. and I have been so amazed at Ben's recovery. We are confident that we made the best decision for Ben!

24 Hours later

We are 24-hours post-op! Yesterday was much better than I had initially expected when we saw him. I was able to feed him within an hour after he got to the PICU and he kept everything down. He took a good, long nap in my arms. I am not sure if it was better for me or for him!

Ben continued to eat well and sleep a lot yesterday. When he would wake up he was in a lot of pain, as you can imagine. He had a couple of doses of morphine throughout the night and did very well. Last night I was able to swaddle him up so he could sleep just like he does at home. This was no easy task because he has atleast 5 different lines in him somewhere (hands, feet, head, chest).

We have had so many wonderful nurses since we have been here. Our nurse last night became a nurse because her son had open-heart surgery at 10 days old. Needless to say, she was very sympathetic to what we are going through as parents. We are so grateful for all of the wonderful people who have helped us along the way.

I managed to sleep pretty well in the recliner (which doesn't recline) in our room. J.P. stayed at the hotel and got a good night sleep so he can be Superdad again today! The night was so much better than I had anticipated.

Ben woke up at about 6am, very happy and talkative! It was SO wonderful to see his beautiful smile again. He was talking to me and having lots of fun trying to take all of his monitors off by squirming around. He is a whole different baby today. He is off morphine and on Tylenol for now. He seems to be doing very well with the pain management. He also had the drain taken out of his head and one IV taken out.

Overnight Ben's hemoglobin levels decreased, so he is getting a blood transfusion as I write this. They said any adverse reactions would happen within 15 minutes, which we have surpassed. Dr. Genecov was surprised that his levels were so low because he looked nice and pink and seemed very happy. They tested his blood 3 times to make sure he really needed it, and all 3 came back about the same.

In about an hour we will move up to the pediatric floor. Dr. Genecov said if everything goes well the rest of the day we may be able to go home (to the hotel) this afternoon. Wouldn't that be amazing!? I am trying not to get my hopes up, but it sure would nice to sleep in a real bed tonight and drive home tomorrow.

We have been so overwhelmed with love and support! I can not thank everyone enough for all of the encouragement and prayers. We are so blessed! I will update again soon.

Surgery is behind us

By special guest blogger: J.P.

My favorite blogger (Maggie) is holding Ben in her arms at the moment, so I get the honor of updating our blog. Ben's surgery went just as we hoped it would. As expected, it lasted a little over two hours. Dr. Genecov's nurse called Maggie about half way through the procedure to let us know that everything was going well. It was definitely nice to hear an update while we anxiously sat in the waiting room.

Ben did great through the surgery. We continue to be impressed by the medical team we chose for Ben. He has two 3"-4" incisions across the top of his head. The first is near the middle of his head (by the ears) while the second incision is towards the back. The doctors said that he now has "a really big soft spot." This combined with the helmet therapy should allow for normal growth of his head.

We are told that he didn't lose too much blood during surgery. We are hoping to avoid the need for a transfusion, but we should have a better idea about the need for one after 24 hours. We will spend the first 24 hours in the Pediatric Intensive Care Unit (PICU). We'll move to a regular room after that as long as Ben continues to recover as expected.

It is so wonderful to hold him and be with him. As you might imagine, he's in a lot of pain. Thus far, any time he has been awake he has been fussing and crying. One of the nurses remarked that he appears to have a red-headed temper. We assured her that was not the case. In fact, as many of you know, Ben is a very happy and easygoing baby and hardly ever cries. Seeing him in pain is very difficult for his mom and dad. But we are so happy to have made it through surgery and are ready to help Ben through the next steps.

We are so thankful for the love and support of our family and friends. Thank you for all your prayers!

Surgery Day

The moment I had been dreading since I first started reading about Craniosynostosis has come and gone. We just handed Ben off to the nurse to take him to the OR.

We arrived at the hospital at 6am. Ben was so cute and happy, which made it so much harder to think about what he will go through today. He was talking to all of the nurses and he had them all wooed! Dr. Genecov and Dr. Weprin came in to say hello, and I got a picture of Ben with Dr. Genecov. We met the nurse, Colleen, who will be in the OR with Ben. She has 6 boys! She had 4 boys only 2 1/2 years apart- so she has a much more hectic life than me! Then the anesthesiologist came in and they took him back to the OR.

J.P. and I are sitting in the waiting room. We are able to see a monitor which will tell us when they start surgery (picture of a scalpel), when they are wrapping things (stitches) up and when he is completely finished (a band aid). Colleen also got my cell phone number and she said she would call with updates.

I will update throughout the day. We can't wait for this day to be over!

Pre-op

We began our surgery week with a celebration for Ben- his baptism. Although it was planned before we had our surgery date, it could not have taken place at a better time. It was so wonderful to be surrounded by family. We enjoyed sharing our happy baby with everyone. Ben smiled throughout the whole service, and took a good, long nap once we were home. All of the prayers and words of encouragement were very helpful. It also helped us to keep our mind off of the week ahead.

This morning we met with Dr. Genecov, and Ben managed to sleep through the whole appointment. I was planning on getting a picture of the two of them together, butBen did not cooperate. So, here is a picture of Ben during our appointment.

Dr. Genecov met with us and told us a little bit about what he will do tomorrow. He said they will remove a 4cm piece of bone the length of his sagittal suture as well as 2 pie-shape pieces closer to his temples. This will allow the skull to grow out. He said it will be like a giant soft spot. He said we will see immediate results, but the helmet will help to encourage proper growth. He said that from the time we hand Ben off to the time we get to see him again will be about 2 hours- one of those hours will be spent mostly on anesthesia and IVs. He also said that when it comes to red-heads "all bets are off." He has toldus previously that red-heads tend to bleed more and can have harder time in recovery than other children. Who knew!? Overall, we feel that we are putting Ben in good hands with Dr. Genecov.

After our meeting with Dr. Genecov we went over to the children's hospital. Ben had more photos taken and some blood work done and we filled out tons of paper work. Luckily the nurse found a good vein and it was not a problem! We also spoke with a nurse practitioner about what to expect after the procedure. Everyone here is so nice and helpful! Having caring nurses and doctors have made a world of difference in this process.

After finishing up at Medical City, we drive to Children's Medical Center to meet Ben's neurosurgeon, Dr. Weprin. He explained the evolution of surgery for Craniosynostosis, which we had not heard before. He said they originally performed an operation similar to the one Ben will have, but without helmet therapy. The results achieved by this were not very good. About 35 years ago, doctors began doing the CVR ("the big surgery"). Dr. Weprin described this as, "taking everything apart and putting it all back together. He said the results from this are very good, but the recovery is hard, and it is not always the best way to treat it. He said a few years ago they began to revisit the idea of the original surgery, but added in helmet therapy and the results have been very good.

Dr. Weprin told us all about craniosynostosis as if we didn't know anything about it (which is funny when we know so much!). He said that Ben appears to be a textbook case of Sagittal synostosis, and he does not believe Ben will have any further problems. He also emphasized that a blood transfusion is very, very low-risk and that we should not worry if Ben has to have one.He also had many praises for Dr. Genecov. He said he has never met a more hard-working doctor, which is always good to hear! We left his office with smiles on our faces, knowing that we have wonderful doctors who will take great care of our sweet Benjamin tomorrow.

We will be at the hospital at 6 o'clock tomorrow morning, for surgery at 7:30. Please say an extra prayer for Ben tonight! I will update throughout the day tomorrow. Thank you again for all of your love and support!