Surgery #2

Miles had his second surgery in San Antonio in October. He had stage 1 again on his other side and stage 2 and 4 on the first side that already had stage one. Since we had already been through one surgery, we were somewhat prepared for this one, but each surgery has proven to have its challenges and this one was completely different than the first. Still up to this point I don't think the ears have caused a whole lot of pain or discomfort, but the drains and the rib surgery have done more than their share. I think Miles is relieved to know he won't have to go through the rib grafting again. His recovery the second time has been much slower, but he is finally back at school and will have his stitches out tomorrow. I will post more pictures after this weekend. Both ears are healing well and Miles is finally feeling more like himself again. We will go back to San Antonio for the next surgery in January, but for now we are taking a break and going to enjoy all of the holiday activities.

Getting ready to be released from the hospital:

Picking up some groceries a few days after surgery:

Stage 1 on the second ear. His small ear remains in place until the next surgery where the doctor will utilize the skin and cartilage from it before removing it and attaching the earlobe:

First side that had stage 2 - earlobe and stage 4 - tragus - little piece of cartilage in front of the ear opening:

Unfortunately the kids had to celebrate Hallloween in San Antonio a few days after Miles surgeries. They were good sports about it and got dressed up anyway. We found a local mall doing trick or treating within the stores and took the kids with Miles' wheelchair to trick or treat and make sure they could still get candy. Even though Miles didn't walk, he was still pretty worn out by the time we were done. The kids actually made out pretty well and I think they seemed to enjoy themselves. Miles wore his costume from the year before, for convenience, since we didn't know if he would even be able to go out and Avery was Ariel. These are a few pics from the hotel room before we left.

 After the anxiety ridden drain removal, Miles felt good enough to share his video games with his surgeon, Dr. Bonilla. He is not only a brilliant surgeon, but he is fantastic with kids.

 Once we got home, I was able to remove the chest dressing after a week and take a picture. The redness around it is just a skin reaction to the adhesive. This didn't happen the last time, but the doctor says it is harmless and at this point it has almost disappeared:

Avery told me today that she's not really 4, we are just teasing her:)

Photo Catch-Up

Somewhat........recent pics:

 Miles' funny face

 Avery's ballet/tap class

Miles' first day of 2nd grade:

 Miles' 2nd grade homeroom teacher:

Avery's first day of preschool:

Avery's preschool teacher, Ms. Grant. Her class is the "ladybug class" this year:

 Not even there 5 minutes and she was already dressing up like a princess:

 Met Miles for lunch at his new school and brought him a candy surprise that he completely approved of!!

Hanging out with mommy:

Being silly trying on mommy's glasses:

 I had trouble with my phone camera during Avery's bday and a lot of the pictures didn't come out, but the one's that weren't blurry are below. She surprisingly chose a Minion (from Despicable Me) party.

Funny face girl:

With some bday presents and her friend Luck the Ladybug from her class:

Sightseeing in the Woodlands

Happy 4th Birthday Avery!

We love you. Love, hugs and kisses,

Miles, Mommy and Daddy

Happy Birthday Lola!!

With love, Miles, Avery, Chris and Christine

Happy Birthday Great Grandma,

Love Miles, Avery, Chris and Christine

One Month Update

Miles surgery was a few days shy of one month ago. His rib grafting scab has finally fallen off, which was the source of quite a bit of drama in our house. It decided to fall off in two parts, so we got to repeat the whole episode a couple of days apart. Miles' ear is healing well. He only wears the ear cup at night by Dr. Bonilla's recommendation and is back to being able to swim in the pool. School will start soon and we will have to make some adjustments there, but we hope he will be careful enough that we don't have to worry. His next surgery to start side two is on October 3rd. He doesn't want to go back because it "hurt",  but we told him that is not an option and he seems to be okay with that......for now. I think a month of school will be enough of a distraction that we should be ready to go again by then. The time will go by fast and I'm not sure how ready we will be, but we have learned a few things that will hopefully help us the second time around:

-No Versed before surgery, wasn't worth the drama

-Benadryl immediately out of surgery to help relax him during his waking stage

-He will feel worse after the epidural wears off

-Not to stress over constipation after surgery 

-He will only need the pain pills for 2 days after, but load up on Tylenol for the next 4

-Miles is going to freak out about everything and we have to be okay with that!!! 

We are still very happy with how he has healed and the results after stage one. As much as we are looking forward to the next stage, there is more anticipation for all of this to be behind us and since we are just starting out, that seems forever away!

15 Day Post Op Appointment

Most out-of-state patients have to stay in San Antonio until their two week follow-up, but because we live in Houston, we were allowed to come home and go back. Dr. Bonilla, was kind enough to let us come in on a Sunday to accommodate our work schedules , after he came straight from the airport, returning from Colorado to attend the Microtia/Atresia picnic held there this past Saturday. He said Miles was healing great and then took out the stitches at the front of Miles' new ear where he made the incision to insert the rib cartilage. He then answered our barrage of questions for an hour until we finally released him to go see his family and we made the long three hour trip home. He is still possibly one of the nicest most humble guys we have ever met and he is fantastic with Miles. He told us to go ahead and schedule our next surgery for late September early October for stage 1 on the other ear. It stresses me out to think we have to go through stage 1 all over again. Miles has already told us he doesn't want anymore surgery. We keep telling him Dr. Bonilla is not finished yet and he has to get through all the stages. Hopefully a couple of months off will help ease his mind before the next procedure. Overall Miles has handled all of this okay, but it's probably safe to say it is as good as we expected knowing the type of kid he is. He gets a lot of anxiety before any type of doctor visit now and wants to know exactly what is going to happen and what it will feel like. No appointment has been without tears, but that seems like something we are just going to have to get used to or he will have to grow out of . We have to be thankful that after an undetermined amount of time, Miles gives in and lets the doctor do what he needs to do. We always tell him how proud of him we are after and he usually concedes to being a bit over-dramatic at the time. These pictures were taken this morning. The first shows where the stitches came out in front of the ear. The next is just an updated ear pic and the last is the incision for the rib area. Dr. Bonilla used dissolvable stitches there and the darkened area is mostly a scab that will lift off eventually. (The markings around the rib incision are from tape residual which is proving harder to remove than I thought, even after several baths.) The remaining scar from the rib graft will be about 3/4 of an inch and should fade with time. 

Congratulations!!

Congrats to the McHugh Family on the birth of 

Cannon David McHugh:  7/17/13. Our love to you all!!

Happy 50th Birthday Auntie Steff

Love, Miles, Avery, Chris and Christine

Two Week Post-op

It will be two weeks on Thursday since the surgery and Miles' ear has been healing well. He seems to be retaining a little fluid in the rib area but the doctor said that is normal as long as it isn't getting bigger. On Sunday we head back out to San Antonio to meet with Dr. Bonilla again. He was nice enough to agree to see us on a Sunday (still can't say enough great things about him). We have a follow up for stitches removal and I will ask him to look at that area then to make sure it is okay. Miles finally gets to take a bath today, first time since before surgery, which is what I am looking forward to most:)

Wednesday Update

After finding out that the doctor was well enough to be able to see us today, we packed up in the hopes that he would let us leave. He said even though the ear is a little swollen, that is normal after surgery. He took the drains out which was a bit dramatic....I mean traumatic for Miles and afterward we were allowed to go home. Yay!!

We have to go back next weekend to have the stitches removed and then the doctor will determine when we can come back for the next surgery. We assume it will be sometime in early October. I will post some pictures again once the drain hole bandages come off. But this one was taken yesterday.  It is a bit out of focus, but shows the ear 5 days after surgery. The additional skin you see at the front is what is left from his little ear, and what will become his earlobe in a future surgery. 

Tuesday Update

So we made it all the way to Tuesday on this nightmare 

rollercoaster and here is the latest as of Tuesday:

This weekend has been kind of difficult. We have been trying to handle Miles' pain the best we can since he decided he couldn't take the pain meds. He has managed ok with just Tylenol, but I think he has put himself in unnecessary pain in choosing not to take the codeine anymore. He has also had some major issues with constipation. This has also involved a lot of medicines that have been less than pleasant to administer. 

We have been keeping a close eye on Miles' ear and it appears to have been draining more blood and getting more red and swollen, so we texted the doctor a picture and he said he thinks it is okay. Of course we were worried about a possible infection, but the doctor will have to determine that once we go to see him. We were supposed to have our follow up appointment this morning at 9:40 but the doctor's office called and told us that the doctor went in to the emergency room last night with pain and vomiting and the suspected kidney stones. Once they found out he would be able to pass it and wouldn't need surgery, they asked if we could reschedule for tomorrow. We are now stuck here for one more day (hopefully) and should be able to leave tomorrow morning right after our appointment. Tomorrow, with a little bit of luck, the drains will come out and Miles will feel a lot better. 

Today after finding out that we had to stay, we took the kids to the riverwalk downtown. We have been staying at the Ronald McDonald house by the doctor's office and they have wheelchairs you can borrow. We have had one that we have used on and off throughout the last few days which has been very convenient considering Miles has had great difficulty standing upright and walking any more than a few feet. And of course Avery thinks it is her ride too as she squishesd her brother over to sit in the seat next to him. Not knowing what to expect we assumed we would be out and about sightseeing by this weekend not thinking for a moment that Miles' progress would have been this slow. It was good that we finally had a chance to leave the room and get the kids out in the fresh air. We got to the riverwalk during a nice break we had been having from all the rain that started last night. We had only been walking for about 30-40 minutes when the sky opened up again and it started pouring buckets. It lasted for about a half hour and by the time we got back to the car we were all soaked, wheelchair and all. Tonight we have to do laundry, clean our room, pack and get ready to go home tomorrow in case they let us. I am so ready to sleep in my own bed!!

Ice cream break today:

Riverwalk in downtown San Antonio:

Stage 1 after surgery. Miles' right ear:

Ronald McDonald house:

Friday Update

The internet connection where we are staying is really poor, so I can't post any pictures right now. We are still taking pictures of the kids, but I will have to wait until we get back to put them all up. Miles is doing well. He is still uncomfortable from the rib portion of the surgery. The ear doesn't seem to bother him at all. We keep checking on it and so far so good. Hopefully by tomorrow, he will be up and about more and we can go drive around a little.  He isn't taking much of the pain medicine because he can't stand it, but I do get half a dose in him every 8 hours and alternate that with regular Tylenol and that seems to keep it managable. We are all very tired since we need to clean Miles' drains every four hours and that requires an alarm being set throughout the night. Avery came down with a cold so her night noises consist of alternating between coughing and snoring,  prooving that children are never without their challenges, but outside of that she has been very good through this whole thing. There are several playrooms at the Ronald McDonald House and she has found a lot of new toys to keep her busy and occassionally another child to play with. San Antonio has the River Walk and the Alamo, so maybe if Miles feels better by Monday, we can go and do some sightseeing. Our follow up with the doctor is on Tuesday and if all goes well, we will get to go home after that.  We will still have to return in a week and a half but it will just be for another follow up and we don't have to stay over. Right now he has a protective cup over his ear, bandages on his chest and two drains, one from the ear and one from the chest. If things look good on Tuesday,  the drains will come out and he will just have the cup and bandages to go home in. The bandages will come off shortly after but the cup remains on for six weeks. We are just very ready to go home at this point and hopefully Dr. Bonilla will say everything is good to go next week.

Follow Up 4pm

Miles did really well today. We did hit a rough patch coming out of anesthesia but he seems much better now and has been resting most of the afternoon. He's up now and eating a popsicle. Avery and I will have to go back to the hotel tonight and chris will stay with Miles. He should be released sometime tomorrow. Follow up is scheduled for Tuesday.

11:30am

Nurse just called and said they are just finishing up and Dr. Bonilla will be out to talk to us in 15min.

Avery is sooooo bored. She's already watched a Sponge Bob marathon, eaten breakfast, played with her toys, rented a movie that she only watched half of and now we are into the "please don't do that" phase. She keeps asking if we can go get Miles and go home: (

10:15am

Miles received an epidural and the rib cartilage has been removed. The doctor will now take the next 45min. to an hour to carve it and then begin putting it under the skin.

8am

We got to the hospital at 6am, registered and did all the pre-op stuff. Met with the doctor, nurse and anesthesiologist and then they took him back. Nurse came out around 8:45 and said that he went under great and the doctor is about to get started. Doctor estimates three hours once he starts, nurse told us four and a half. So we are hoping for sometime late afternoon we should be back there to see him.

Kids playing games waiting to register:

Before Pictures

Left ear:

Right ear:

 Straight on:

"Mom, you know I look stupid with this headband on. Can I be done now???"