New ear: Part two.

Matilda had her second part of her surgery (this part usually happen 3 moths after the first surgery) where they take a skin graft from the area above her new ear and then placed it over her new ear after they lift her new ear up. They took some extra cartilage from her rib at her last surgery and stored it right underneath her skin for later use. It’s a pretty neat idea since they don’t have to cut her deep down again and the cartilage has a perfect little safe storage place.

I had asked the surgeons if they would be willing to give Matilda an ear pierce during her surgery since I am afraid to go anywhere with her new special ear! Matilda and I picked out her first earrings and had it all ready to go the morning of the surgery. In the picture you can see the mark where they will place her earring.

The surgeons took pictures of what they had done and it’s pretty great.

She did not have to stay overnight for this part of the surgery and just have to rest for about 2 weeks. With this surgery there are lots of wound care and frequent doctor’s visit to check on the wound. Matilda did great and was very happy with this one since she did not have to stay in the hospital.

Matilda wore these bands I got her daily when she went out to cover her wounds but after 2 weeks or so, she decided to not wear it and just show her cool rock start look.

Happy New (Y)Ear!

Matilda had the first part of her rib cartilage reconstructive surgery and she stayed in the hospital for 5 days after. The surgery went well after a good 12 hours and her surgeons were very happy with the result. Here are some pictures that the surgeons took of the ribs they took from her to build her a new ear.

You can tell what an amazing work the surgeons did and some skills! In the last two pictures you can see the 2 tubes that are below her ear that helped her drain the fluid. It was not comfortable at all and she did not like it when she noticed them.

Matilda woke up pretty happy and it was not until hours later when she realized she had all these tubes coming from her ear and her rib wound that she shut down and was feeling extremely sad.

She had a tough time when we were at the hospital once she saw all the tubing and how restricted she was with mobility. She refused to look at herself in the mirror and pretty much refused to talk or even eat. When the nurses asked her about her pain level she was always nodding that she is fine (I think it was just easy to do so than saying anything else). The doctor gave her goals and one of them was to make sure she moves her neck around especially the side she had surgery because kids tend to avoid it which then causes stiffness. Matilda did just that. She was afraid to move her new ear side. I had to constantly remind her of our goal which is to go home after 5 days and we do not want to stay longer, so after 2 days she finally got better of moving around but still with lots of prompting. Her mood was still very down and I was definitely feeling frustrated. I asked for a physical therapist to work with her and the doctor instructed the nurse to give her higher dose of pain medication versus the low dose she has been getting. Matilda was also very sleep deprived since every 2-3 hours a nurse would come in and check her vital and administer her medication (and when the medication is done it delivers a loud beeping sound that does not stop until a nurse comes back in). No one was getting any good sleep. On the third night, I requested that she needs at least 6 straight hours of no interruption and we worked it out so that she had her medicine as late as we could so she can sleep better.

Matilda had received gifts before the surgery so that she could open them while she was there but Matilda refused to open any of them nor did she want anyone to visit. She wanted to do everything when she gets home.

It was a long and tough 5 days but she did it. I think it was hard because it is completely not what she had expected. But she did it and she was so brave and she can’t wait for Christmas. Our second part surgery is in 4 months and she will not have to stay in the hospital and just rest for 2 weeks at home.

Happy New (Y)ear!

SHE LOVES PINK AND SHE WANTS YOU TO KNOW.

My little girl is growing up way too fast. She turned two years old in January and she is no longer a baby but an official toddler with so much to say and constantly on the run. It is so true when you hear people tell you to enjoy them because they grow up fast and they really do. They are growing up way too fast and there is no slowing down for sure. Watch out world, my little Matilda is ready for the world. 
Matilda has been at Early Start and she started Total Communication class since she was 18months old and she has been keeping up with her sign language (so have I and Milo) and she is using it more on a regular basis which is awsum. What I love is the fact that I can use sign language with her and it is like our own little secret (and it’s a bonus because I can sign to her versus raising my voice in public when I need her to behave). She had a recent visit with her audiologist and there were some fluid found in her ear and we will back to check on that again soon and hopefully that will be gone since that is her good ear. 

EARWELL DEVICE NEEDS PUBLICITY. SPREAD AND SHARE.

it was matilda*’s turn today at the doctor. we went to see a plastic surgeon at Stanford about this EarWell device that our pediatrician told us about. we read an article on it hoping that maybe matilda would be a good candidate but it turns out that EarWell doesn’t work with kids that have microtia. BUT i want to spread the news of this device to everyone out there since this is very new and a lot of people don’t even know about it, including doctors. i told matilda’s hearing aid teacher and she will spread the word for me with her colleagues. i am hoping that all the people that does hearing screening in hospital will be educated about this as well since early intervention is the key. spread this so children can benefit. thank you.

SPREAD AND SHARE.

*please see this post for history of my kids.