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!

Surgery Week

The countdown has begun... Four days from right now Ben will be all done with his surgery!

J.P., Ben and I will be leaving for Dallas on Monday afternoon. We will meet with Dr. Genecov on Tuesday morning. After that Ben will probably have some bloodwork done and we will do pre-admission at the hospital. We will also meet with the neurosurgeon, Dr. Weprin, on Tuesday afternoon. We should have a better idea of how everything will play out after these meetings.

Wednesday morning we will have to be at the hospital very early, probably about 5:30a.m. His surgery is scheduled for 7:30 and should last approximately 2 hours. I have no doubt that it will be the longest 2 hours of our lives! We will be able to get updates every half-hour, I think. Once he is all settled in the PICU we will be able to be with him the rest of the time. Both parents are allowed to stay in both the PICU and regular pediatric floor. Ben is expected to be in the PICU for the first night, and then moved to the pediatric floor at some point during the second day.

We are hoping to come home on Friday, assuming everything goes well. We are SO grateful that my sister, Lindsey, and her husband, Jim, are coming in from Kansas City to stay with Jack and Luke while we are in Dallas. Thank you Lindsey and Jim!!!

Ben and I will travel back to Dallas the following Monday for him to be scanned for his helmet. He will receive his helmet on March 18, and wear it for 3-6 months. Ben and I will then fly back to Dallas once a week to have it adjusted.

I have taken some "before" pictures of Ben's head, which I wanted to put on here for everyone to see.


Thank you again to everyone for your well-wishes and support. We are so blessed to have friends and family like you!!

Reassurance

It has been a week since we decided to schedule surgery with Dr. Genecov. The night I wrote the blog post about our decision I had butterflies in my stomach as I hit "Publish Post." I was so worried about whether or not we had made the right decision, and telling everyone made it feel so permanent- even more so than scheduling the surgery!

One week later, J.P. and I are both at peace with our decision. It is a decision no parent should have to make, but we feel we are doing what is best for Ben.

I wanted to share a message that I got from a mom whose son had "the big surgery." Her message made me feel so thankful that we had other options, and that we decided to do the limited CVR procedure. Here is what she said to me:

I believe whole heartedly in your decision and if this had been an option for my son I would have done it in a heartbeat. For days after his surgery I kept silently killing myself with the question of "how could I have done this to my baby?" Granted, now he is healed, but I do believe they remember pain. Also, one of the key points my doctor told us was that there was still a risk with the full CVR of having to go back and "tweak things" so to speak. GO BACK... Never. As for the scar that stretches from ear to ear, I was just talking to my husband the other night about it when I realized "what if he starts going prematurely bald?" I know that is a silly thing to worry about, but it's a worry none the less. I know this may make me sound like a horrible mom, but I will never do this to my baby again. I am glad that I was able to help him lead a more "normal" looking life, but seeing my baby helplessly in pain was just horrible. This is an honest reply about the procedure... I wish that the smaller procedure had even been an option. I remember when this whole thing started for us; I was thinking all we would have to do was helmet therapy, which was totally doable. Your little Ben is just
adorable! I love your blog and I will be following your story all the way
through!

Another conversation that made me feel so much better about our decision was with my Papa. I told him that I was concerned about whether we had made the right decision, and he told me that it was not about whether or not we made the "right" decision; it was that we were making the "best" decision. He told me to have confidence in our decision going forward. It's impossible for us to know today whether we are doing the "right" thing, but I know that we are doing what we believe is best for Ben.

We have received an overwhelming amount of support over the last week. Thank you for all of the wonderful words of encouragement and prayers. Keep them coming- the next 2 weeks are going to be the hardest!