Right Eye Surgery... Back to CHLA

On Monday, October 12th we found ourselves back in the hospital. It was different this time because we knew what was going on and why we were there but the scary feeling was the same. We hoped and prayed that we could go home right away. She looked so cute in her scrubs, ready for surgery. The plan was to go in remove the scar tissue building around her pupil (making a triangle instead of a circle) to restore the shape and to implant, if possible, a lense. Dr. Song said it would take 30-45 mins but once there they said it would be at least an hour. We left her, had lunch and came back in 30 minutes. They receptionist gave us a big scare. She had a heavy accent, I can't talk because I know I have one here and there... anyways, I couldn't tell if she spoke Spanish or something else other than English. She looked at Kurt and I saying "Apnard?" We said "Amber" She said, "Wait right here, I need to talk to you about Apnard?" again we said "Amber?" She said, very excited again "I need to talk to you about Apnard" So we thought maybe she is saying Amber and we just don't understand her because we tried to clarify. Once she was able to speak with us she said, "Are you Apnard's parents?" We said, "Our daughter's name is Amber Brubaker" She said, "Oh sorry no I am looking for Apnard's parents, I need to talk to them". Off we went to the waiting room. It was two hours later and no news from Amber. Then another nurse came in the room, looked at me and said "Lopez?" I said, "No Brubaker" she said "Oh ok looking for Lopez"... I told Kurt, I might look like a Lopez but I married a Brubaker :-)... ok back to Amber. They had a hard time getting the IV started, I wished someone would have come out and said something.

All went well. She was intubated, scar tissue removal was successful, right eye lense implant was successful, and extubation was successful. They wanted to keep her overnight just to make sure. We came home, Kurt stayed with my mom, Kyana and Taylor while I drove back to spend the night with Amber. She was discharged the next morning after the Dr. removed eye patch and checked that everything was good. She needs eye drops four times a day for a month. We had a follow up on Saturday, October 17 in Pasadena. Dr. Song says everything looks good, continue the drops, make appointment to fit left eye for a contact lense, if things don't work out with the contact lense we might need to do implant on left eye. He would rather wait as long as possible for that implant but if it needs to happen then that will be our next surgery. As for the right eye, we will have another follow up in a month.

She is doing so great... thank you for all you do for us.

We've Been Really Busy...

In the last few weeks, Amber has come a long way. We've been home for over 3 months... I can't believe it. I've realized that ambulance and fire trucks scare me or just the ones coming close to our house. I also realized that "normal" is not as "normal" as I thought. The first two kids did not come with a manual but they did a lot on their own. They ate, rolled around, seat up, picked things up to put in their mouths, ate by the ounce and found their toes all on their own. Amber has to learn how to do the basic things including her toes and we get to teach her.

She started with just drops in her pacifier and now she drinks one ounce at every meal when she's awake, she takes the rest via feeding tube. Everyday she gets stronger, rolls from tummy to back and side to side. We are still trying to get her to go from back to tummy. She had a few more vaccines last week including the flu shot which they want everyone at the house to have plus the H1N1 when it's available.

We've added a new doctor to her list for her feet or I should say toes but like all the rest we have to wait and see what happens naturally before he can actively do anything. Dr. Song her Ophthalmologist will be doing a procedure on her right eye to remove the scar tissue. It is possible for her to get a lense in her right eye since it continues to get scar tissue, we will know more on Monday, October 12th, the day of her surgery. We don't know if she will need to stay over night, it will all depend on how she does during and after surgery. Please keep her in your prayers and send all your positive energy her way. Surgery scheduled for 9am. Thank you.

I Love My Daddy

Many Blessing for Amber

It was another busy week for Miss Amber. We've started Physical Therapy on Mon/Wed/Fri at 9am. She already has Oral Therapy Tues/Thurs at 9am, so it's a very busy week. Kurt's brother Daren came for a visit. We spent Kurt's birthday with the Varricchios and had lunch with his Grandparents today.

During the week Amber saw Dr. Crocret (ENT), he said she had fluid in her left ear and prescribed an antibiotic. Saw Dr. Sami (Ophthalmology) and found out the eye drops were not helping, they will have to go in to remove the scar tissue on right eye. Also on Wednesday we noticed some bleeding from her feeding tube site. Thank you to Molly Rapini and Janel Groussman for all your medical advice. The next day we saw GI and Neurology. GI said it would be fine and that the antibiotic for the ear would also help with her feeding tube area. The Neurologist was another story... it was a scary Thursday and Friday. Thank you to my mom, Robbie Baranoff and Katrina Fineberg for covering with Kyana and Taylor while we were dealing with Amber.

We had been waiting and looking forward to our appointment with neurology, to learn more about Amber. Dr. Lott came in touched her soft spot on her head, walked out, reviewed the films from CHLA CAT scan and CHOC's MRI, touched her head, walked out, touched her head again and asked if there were any changes or if Amber had been irritable. We said yes on and off but we thought it was the new eye drops, the increase in milk volume, the cereal we were adding to her night time milk, or skipping her 1am feeding. He said I need you to go to the ER to get a CAT Scan of her brain, I feel she is having pressure and will need surgery right away to relieve the fluid. He sent us to St. Joseph's next to CHOC in Orange because they have the pediatric neuro surgeon there. After four hours of waiting, doing the scan and waiting, they felt the fluidwas not significant enough to do surgery right away. We had the option of admitting her into the hospital for them to check her in the morning or coming back in the morning to see the Neuro surgeon. We took her home and came back in the morning. Dr. Muhonen said there was no need to do a shunt, which is a lifelong, life changing procedure to relieve fluid pressure from the brain. He said any baby that has been through what Amber has goine through would be irritable. The things to look for in Amber is lack of activity, sleeping a lot and golf size bump from her soft spot. We were relieved, my prayers were answered. We will have to follow up with both Neurologist (keeping track of her outside brain activity, moving, talking, walking, etc.) and a Neuro Surgeon (keeping track of her inside brain activity, flow of fluid and brain growth). The surgeon said the amount of frontal brain fluid should go away with age, about 18 to 24 months old. He also said the brain fluid was caused by the heart defect.

It was a good ending to our week, Kurt's birthday and family time. Thank you for caring about my Amber :-), for all your good thoughts, positive energy and prayers.

Doing Great

I am late again with the blog... sorry :-(

It was a very busy week and it's not going to get any easier. The girls started school Kyana in 4th grade with Mrs. Justl (4th/5th grade combo); Taylor in Kindergarten with Mrs. Buxton (Kyana's kindergarten teacher and an awesome person all around) and Amber continues to go with Amanda her Oral therapist.

On Tuesday, Amanda found a bottle by First Years which has the same feel as her pacifier from the hospital "soothie". What a great find, she took 3 cc on Tuesday, 10 cc on Thursday and today 15 cc... she is progressing. I didn't think it could happen but we will start doing home trials this week. I will have to get some bottles myself to have a back ups. We also started physical therapy... finally... on Monday, Wednesday and Friday.

I don't have any pictures to add this time but I will next time... my external hard drive crashed without warning or explanation but my wonderful husband brought it back to life. I would have lost all my pictures and videos of the girls... ALL.

So my girls have given me no personal time unless I decide to become a vampire :-)
Kyana has school from 8:15 to 2:35pm Monday through Friday possibly going to gymnastics on Fridays. Taylor has school from 8:15 to 11:45am Monday through Friday would like to find something for her to do after school once a week. Amber has oral/physical therapy 9:00am to 9:45am Monday through Friday with the usual once, twice or more times a week doctor appointments. This week Tuesday E.N.T. says she might have an ear infection due to extra fluid in the left ear; we will do antibiotics for 10 days. Wednesday is Ophthalmology to see if she will need surgery on right eye again to remove the scar tissue. Thursday is Neurology... also finally. I hope they don't cancel or reschedule this one.

As always, thank you for your good thoughts, prayers and positive energy. I will add pictures and update on Sunday :-). Take care.

Our Busy Week

It was a very busy week... sorry I am late not our usual Sunday night. We had all the cousins over, the kids had a great time, we laughed, we ate, and everyone went home.

Amber started last week with an easy Monday but on Tuesday we are up bright and early. Tuesday we met Dr. Zadeh, genetics. She had nothing new to say, just that all the syndromes they could test her for, they've tested her for and it's all negative. They will have to wait to see how she continues to grow and develop to attach a syndrome to her. The next appointment will be in six months. She did say that anything this syndrome could have caused it has already done so, there should not be any new developments due to what she has.

On Wednesday, we saw Dr. Sami, Ophthalmology in Orange. He saw that her right eye is still pulling the pupil away from the center due to scar tissue. We have a new and different eye drop to see if this will help. If it does she will be fitted for contact lenses in two weeks, however, if it does not help we will need to go in for surgery. The surgery will be to remove the scar tissue and allow the pupil to be round again, it should be an outpatient procedure in and out.

On Thursday, we saw Dr. Grant, GI in Mission Viejo. This was an exciting appointment. We made some changes to her feeds. One we are skipping her 1am feeding so instead of 8 times a day she eats 7 times but the same amount in one day. We also added rice cereal to her milk once a day, we do this at her 10pm feed so that it helps her last through the night until 4am. We are able to get a little more sleep time. We also learned that her MicKey button will be changed every 3 to 6 months. We can bring her in to the office to get it done or do it ourselves at home... I am not sure we are ready for that adventure so when it's time we will take her in.

On Friday, we had our big Neurology appointment that got cancelled. After several calls back and forth with their office we still don't have a new date and time. I hope we hear something this week.

Amber continues to grow 13 lbs 8 oz and 24 inches long, she is doing great. Oral therapy is still going on Tuesdays and Thursdays she is progressing according to the therapist but in my eyes we have a long way to go :-( Please continue to pray for her progress, and continue to send possitive energy our way. Thank you so much for your love and friendship.