Wednesday, May 27, 2009

The bandages come off! (3 Week Post Op)

Today we removed Lauren's bandages and protective cup covering the ear. From here on out, she doesn't need the protection. She will still need to keep the area moist as the skin graft continues to heal. The area where the graft was taken is also healing well and her hair is already growing back. We sent some pictures back to Dr. Lewin for her to review. I have included some of those pictures here as well. It really looks amazing and it will continue to get better every day.

Saturday, May 23, 2009

Thursday, May 21, 2009

Well, we made it through Lauren's final post op. We flew into Los Angeles just for the day, (Thank you Tauni!) May 20 for Lauren's last post op appointment. Dr. Lewin is very pleased so far with the results. She said Lauren scores an A if she were to grade her progress, but kids heal differently so she wants to see pictures regularly as Lauren heals. Due to our employment situation, Dr. Lewin also has decided to move her second stage ear surgery to September so that we won't have to maintain COBRA for as long. She is great and treats patients more like family. She is the only doctor we have met, and we have met lots, that gives hugs and seems genuinely interested in our family.

So, as far as Lauren's ear, we will leave the bandages on for one more week and then we just have to keep it super moisturized over the next couple months. Her ear is still swollen and it will take over the next several months for the swelling to go down and for the ear to become more defined. We think it is beautiful and are amazed every day at the modern medical miracles.

Now on to the next surgery. It will be on July 28 and will be on her jaw to lengthen it a bit. We are so happy it will be here in Salt Lake City. Thank You so much to family and friends who have helped us in so many ways! Without all of your support we would not have been able to get through this.

Wednesday, May 13, 2009

Day 10 & 11: Coming Home

Well we made it home! We were very excited to be back in our beds again. The other two kids were sleeping when we got home so we didn't see them until today. Cameron was very happy to see Mom again before school. Kara was also excited but that wore off quickly. She was glad to have someone to play with today.

The appointment with Dr. Lewin went very well yesterday. She was happy with the progress so far. We saw the ear for the first time. It appeared very swollen to us, but the doctor said that comparatively Lauren's is much less swollen than she normally sees. She got her hair washed and her bandages changed. I included her before hair washing picture because I don't think we will see her hair like that again. The doctor is very pleased with her swelling and the lack of cleaning she had to do. The skin graft looks great so far and we just have to hope and pray that she will heal well. It sounds like how they heal is the one big unknown in this whole process. Becky will fly back with Lauren a week from today for another checkup and dressing change. After that, we are on our own. We will send the doctor many updates and photos so she can review her progress in the upcoming months. There will be a second surgery that should take place in October/November that will primarily be done to touch up the new ear. She said this surgery would be about 1/4th the time it took on the last surgery. However, she may want us to stay there for up to a week if needed during her recovery. As for now, we will let her heal and try to get ready for her jaw surgery in July. I would say we are half way home with her journey, but at least for now, all of us are home.

Monday, May 11, 2009

Day 9: Last Day of Disney

Wow..5 days of Disney is about the limit. I think we did almost everything Disney has to offer. It has been a good trip for Lauren. Today she would not rest until she saw Minnie again and gave her a flower she found. We mostly just went on any rides that Lauren wanted to do again. She also picked out some gifts for her brother and sister to give to them when we return tomorrow. We visit with Dr. Lewin tomorrow afternoon and then head to the airport. Dr. Lewin will be taking off the bandages and dressing. They will be able to wash Lauren's hair for the first time in a week. This will be the first opportunity to see her new ear. Well big ear. We tell her that her little ear grew. She asked us today how old Cameron was when his ears grew. They will then bandage her back up and place the protective cup back over the ear. Becky will fly back with her on the 20th of this month to have the bandage changed again as well as do another check of the ear and how it is healing. Dr. Lewin said that no further visits will be needed but she would like to have pictures sent each week to evaluate her progress. She says a picture is worth a thousands words to her. It looks like leaving comments on here is easier now. Sorry for the issues.

Sunday, May 10, 2009

Day 8: Open Comments Now Available

A few of you have mentioned it has been difficult to save comments. I have gone in and found some setting changes that should make that easier. Before I guess you had to register for a google account. Now, you should be able to add comments under anonymous or under name and it should work. We do appreciate the comments and support. Lauren I know appreciates it as well. Today we spent another day in Disney. One more day to go. I think we have done about everything. We saw all the parades they had to offer today. Lauren was intent on giving a flower to Minnie Mouse today, but we couldn't find Minnie to give it to her. We celebrated Mother's day the best we could for Becky. I think we missed out in the morning, but we think Disneyland gave out flowers to all Mother's that came into the park today. Becky was also greeting with a Happy Mother's Day from all the cast members in the park. She was a bit saddened that the other two kids weren't here to share it with her. However, she did get a phone call and talked to Cameron and Kara. To cheer her up, we went to dinner at the Cheesecake Factory. As Becky will admit, good food is one of the greatest gifts you can give her. Lauren is still doing very well. I think she is starting to slow down a bit, but so are we. We are anxious to get home soon.

Day 7: Lauren vs. Tower of Terror

The day was filled with Cotton Candy, Popcorn, Fireworks, and more rides. We even got Lauren to go on the Tower of Terror. She was not tall enough to go on a lot of the bigger rides last time we were here. We thought it may be too much for her, but she made it through unscathed. Any rides that throw her around side to side we worry a bit because we don't want her to hit her head. This ride was more up and down, so I think the concern was if she was going to be too scared to go on it rather than being in danger of hurting herself. She didn't scream or cry. She just closed her eyes and held onto us. If you ask her if she wants to go again, she says no. Just like her brother. But at least she can say she has been on a grown up ride. We are having a lot of fun but are missing home and the rest of the family. We can't wait to get home next week.

Friday, May 8, 2009

Day 6: Happiest Place on Earth

Our second day at Disneyland was spent trying to meet as many characters as possible. Lauren wanted to meet Minnie Mouse ever since she got here. She was very excited and antsy waiting in line to get her autograph and give her a hug. She is healing well. There is still some bleeding from the area where they took the skin graft and the stocking cap she has to wear makes her head itchy. Lauren is also a bit more swollen today than previously, but the doctor said that is normal. She doesn't complain though and she has gotten used to wearing it. Tomorrow should be another full day of adventure for her and us. We are going to California Adventure tomorrow and maybe back over to Disneyland in the evening for fireworks.

Thursday, May 7, 2009

Day 5: Half Way Home

Five days down, Five more to go. Today was pretty uneventful. In more ways than one. But overall, Lauren is doing fine. Not much to report. We took her to Disneyland today and had a good time. We went on all the rides she wanted to go on and we plan to do more tomorrow. I think she really misses not having her brother or sister there to share this with them. We were given what I like to call the "golden ticket". It allows us to go on any ride and not have to wait in the lines. They put us right on. It is fantastic. The best part of the day however, was during dinner. We were eating at a restaurant and Lauren saw that many kids there were playing with balloons. Well, this made her want one. We were seated by the exit and a family that was leaving walked past us. There was one young girl that was around seven years old that was carrying a balloon and she glanced over at Lauren and saw all the bandages she had over her head. She waved to Lauren and walked out with her family. A few seconds later, she came right back in the door and walked up to us and gave Lauren her balloon. I was stunned and didn't know what to say. We attempted to thank her and she ran back out the door. That was awesome to see and Lauren was very grateful.

Wednesday, May 6, 2009

Day 4: Back to the Doctor

Today we had our first check up after the surgery. Lauren has been doing well and has little pain. The only medication we have given her is antibiotics to make sure she does get an infection. The appointment today was to remove the two drains that were placed during the surgery. They we placed to help remove fluid underneath the new ear as it healed. We were told the removal of the drains would be painful, and it was. This was the first time we have seen Lauren cry throughout all of this. Although it was quick to slide them out, the area is very tender and I am sure it hurt. Once they were gone, the pain subsided quickly. The doctor was very happy with her progress so far and told us some things to look for until the next appointment. She has had very little swelling and any bruising she has had is on her back from laying on the operating table for so long.

The rest of the day we spent in Beverly Hills and Hollywood. We took pictures at the Hollywood Walk of Fame and at Graumann's Chinese Theater. We also bought a map that showed locations of all the star's homes and we drove past a few. It is hard to see them because of the trees and hedges surrounding them. Very interesting places though. We have returned to the hotel and plan to rest after our long day. Tomorrow we will try to go to Disneyland. Lauren is excited and we think it will be a great way to reward her for this whole trip. We are going to try and get a stroller for her so she won't have to exert herself too much by walking around the park. Our next doctor's appointment won't be until next Tuesday, which is the day we head back home. Not sure there will be much more to update with her progress until then. That should be the first day we get to see her new ear. The dressing will be changed again and we will finally get to wash her hair. In the meantime, she has a new stocking to wear over her head and it gives her a cute ponytail out of the top.

Tuesday, May 5, 2009

Day 3: The Day After

Lauren slept well through the night. We did give her some medication for the pain, but she hasn't needed any today. We have mostly rested today. We took her down to the pool to get her walking around a bit. We also ended up taking in a movie since she was wanting to go out and do something. She seems to get tired quickly so we came back to the hotel to rest. Tomorrow we will visit the doctor to have the drains removed.

Monday, May 4, 2009

Day 2: Surgery- 8 PM (Post Surgery)

We have made it back to the hotel. We were with Lauren in the recovery room for a little over an hour. She acted very much like she did after the first surgery. She was disoriented and didn't understand what was covering her head. She kept trying to pull off all the tubes and wires that were hooked to her. However, she didn't seem to cry or be in much pain. She slowly started to come around and we even got her to smile. She complained of her back hurting a bit but we think it was from laying down for such a long time in surgery. She has a big mesh stocking cap that goes over her head and down her neck. The face is the only thing cut out. I think she looks like a cute white tele-tubby.

She has a protective cup that covers the new ear so we haven't been able to see it. However, Dr. Lewin took some pictures and showed us in the waiting room. Her face looks a bit swollen and the Doctor says she may swell some more in the next couple of days. Again, she said the most difficult part of the surgery as finding thick enough skin to graft into place. She ended up taking the graft from the back side of her head. This shouldn't take too long to heal if it is anything like the last graft they took in for her surgery in January. She has two plastic tube drains that are placed under the skin and ear. We are to monitor the drainage and make sure there is constant suction. They don't expect there to be a lot of draining however. She will have to keep these drains in for 2 days and then they will be removed.

Just from the looks of her, I think she will be able to bounce back as quickly as she did with the first surgery. She hasn't asked for any pain medication yet other than children's Tylenol. Tomorrow we will rest her as much as she wants. Wednesday we will head back to the Doctor for her first check up. We probably won't be able to see the new ear until next week, but I have asked if the Doctor can give me some of the pictures she took today. Thank you everyone for checking in and leaving your comments. It made the time go by faster by having this outlet to utilize.

Day 2: Surgery- 4 PM Upates

The nurse just let us know they are closing and we should be able to see Lauren soon. We are excited to get her back to the hotel and get out of this waiting room. Overall things have gone well with the surgery.

Day 2: Surgery- 2 PM Upate

We hadn't heard anything in a while and we went down to the cafeteria to have lunch. The doctor called and gave us news. She said everything is going fine and the hardest part so far has been finding a skin area thick enough to use for a graft. It sounded like the Medpor framework is in place and they will spend the rest of the time putting everything together. She said Lauren has been doing very well and continues to be stable. I think we will be here for at least another 3 hours.

First Celebrity Sighting

I was joking when I said we would see a celebrity here. Especially since this seems to be a major hospital. But we have famed NFL/sports announcer Al Michaels sitting in the waiting room with us. All indications is he is here to see a new baby. Not sure if he is a new grandfather..more to come.

"Do you believe in miracles!?! Yes!!"

Day 2: Surgery- 11 AM Update

We just talked with the Nurse again and things are going well. They said they are working on harvesting the skin graft for the new ear. The doctor wasn't sure where she was going to take the skin until she got in there. Either it would be taken from her head, the backside of her other ear, or possibly from underneath her arm. Not much more to report.

Day 2: Surgery- 8 AM Update

We arrived at 6 AM and checked Lauren into the hospital. We didn't have much trouble finding it and traffic was light. I think we will be here all day. The hospital is much different than the one at Stanford. Here there is a lot more going on. They gave Lauren some medication to relax her before surgery. It worked very fast and she was loopy in a matter of minutes. They carried her off and sent us to the waiting room. We share the same waiting room for the maternity ward, so it is pretty busy. The nurse just called us to let us know that the intubation for anesthesia went smoothly and they will be starting the procedure soon. They will call us often with updates.

Sunday, May 3, 2009

Day 1: Medpor Surgery-California

We arrived early this morning in Long Beach, California. We had an early flight and had no trouble getting seats on standby. As soon as we landed we called Dr. Lewin to let her know we had arrived. She wanted to meet with us the day before the surgery. She met us at a local hotel in the area and went over the surgery and what to expect. She reviewed all the risks associated with the surgery and answered any last minute questions we had. It will be a long day tomorrow for her and us. The surgery is expected to last approximately 8 hours and we have to be at the hospital at 6 AM. I will be taking our laptop with us and I will be updating the blog with the latest news. We are very confident in Dr. Lewin and she leaves nothing to chance. She is very thorough and wants everything to be perfect. We really appreciate her skills and her compassion.

Afterwards, we went to have breakfast and hang out at the ocean in Manhattan Beach. Around noon, the weather started turning really warm. We had a good time and I think it was Lauren's first time playing in the water. We built sand castles, checked out the local aquarium, and just took in the sun.

Later in the afternoon, we checked into our room in Anaheim. The room is very nice and we got a great deal. Thanks Priceline!! We are very close to Disneyland and we hope that after a few days of recovery, we will be able to take Lauren to the "Happiest Place on Earth." We had a nice dinner at the Bubba Gump Shrimp restaurant and came back to hit the pool.

While we were soaking in the hot tub, I got a chance to watch just how strong Lauren has been in this journey so far. As we were in the hot tub, three younger girls came and sat down next to Lauren. They were all older than her but varied in ages. Because Lauren's hair was wet, the girls noticed her birth defect right away. They couldn't help to look. I didn't feel like they were being cruel, but rather they were just curious. What affected me the most was that Lauren didn't shy away or act insecure in any way. She just looked at them as if she was trying to say hello and be their friend. All I kept thinking about was after tomorrow, she wouldn't have to endure the casual looks or answer questions about her condition. She knows why she is here and she isn't afraid. If you ask her why we are here in California, she says that she is going to see the Doctor to make her little ear grow. Although she still has a ways to go, she has been a trooper through everything and I don't see her changing in the future.