A good day

Avery is doing really well today. We saw the Pediatrician and she doesn't have an ear infection! Her right eye is open a lot today too. Her mood is good and she is smiling, laughing and playing a lot. I guess there are good days too :o)

Trip to ER for SVT Episode & Ear Infection

Yesterday, Avery seemed a little off. I called her surgeons who explained that there are "good days & bad days". All night she was irritable and not sleeping well. I figured is was a bad day. At 7 am, I decided to check her heart. Sure enough it was over 200 beats per minute - she was in SVT. She was likely in it (on & off) since yesterday. We applied ice to her face and took her to the ER.

Once we got there, her SVT had subsided due to the ice pack. They also discovered she had what looked like an ear infection starting. We were sent home with instructions to make an appointment with our Pediatrician on Monday to check the ear infection. Also, the Cardiologist will likely call us tomorrow to bring Avery in to see if we need to change her heart medication to control the SVT.

Poor Avery has been through so much already this week, and now has to deal with her heart acting up ;-( The doctors assured me her heart acting up is purely coincidental and not due to the affects of having just been through surgery.

Post-Surgery Day #5: Eyes open a little more

Her left eye is open a little more and the right eye is just barely starting to open. She is a little more sluggish today, but we are no longer giving her pain meds. The swelling is still pretty significant, and the bruising is turning shades of dark purple, yellow and green....poor little lady :-(

Post-Surgery Day #4: Eye is open & going home!

Avery's left eye is slightly cracked open, so we get to go home!!!! I am so excited to go home, see Kyler (my 3 year old son) and get this surgery behind us! Rady's Children's Hospital has been wonderful and our team of surgeons did a great job & have made us feel comfortable with everything throughout this ordeal. But, now it is time to leave this place and move on with our lives. :o)

Thanks again to all of you who have followed Avery through surgery. I will continue to post updates through her recovery and throughout the progress of the rest of her health issues. She still has many more battles (svt, scoliosis, torticollis) to get past, but if she can handle this crazy surgery, she can handle anything!

Post-Surgery Day #3: Playing & Smiling!

Avery is doing great today! She is playing with her friends (pictured above), smiling and even laughing occasionally. She already seems back to her old self, except she is sleeping a lot. She still looks very swollen and bruised, but it does seem like the swelling is going down. We are starting to clean her incision twice a day with antibiotics. So far, the incision is looking good and healing nicely. Hopefully she will open her eyes tomorrow!

Post-Surgery Day #3: The dressings are off

They took the dressings off today. You can see part of the incision in the picture above. It goes all the way across her head. She is still very swollen and eyes are bruised and shut. She has been doing really well though. When she is awake, she actually tries to play. I can tell that if her face wasn't so swollen you'd be able to see the smile hiding in there :o) She is eating very well and is no longer on Morphine. The Tylenol is keeping her very comfortable and she isn't even taking that very often. She is sleeping good too (although, the nurses keep waking her up)!

They still say her eyes probably won't open until tomorrow, at which time we can go home!!! Thanks again for all the emails, texts, posts, voicemails and comments on the blog. They are all being read and are much appreciated. And, thanks for the flowers too....they sure do brighten the room!

Congratulations!!!!

My brother Eric and his wife Lori welcomed their first baby boy at 5:18pm today!!! Benjamin Grant Lovering weighs 8 lbs 1 oz and is 21 inches long. They are also at the hospital right next door to Avery's hospital. I am hoping to meet him tomorrow. Congrats again and all our love!!!!

Thank you from Rady's Children's Hospital

We gave all the toys to the person who coordinates the toy distribution. She was THRILLED when she saw all the toys and was very impressed with them all. She kept saying that our family and friends picked out toys that are always very popular with the kids. We personally will not distribute the toys, but they will definitely make it to the hands of some sick kids. So, thank you all again for helping us do something positive while we are here.

Post-Surgery Day #2 Update

Avery has been doing good today. They just took her off most of her monitors, IV, and catheter. We are finally able to dress her and hold her without worrying about the monitors. Her eyes are still very swollen and bruised. She doesn't seem to be in much pain. Will update again soon.

Post-Surgery Day #2

Avery's Ocular Surgeon Fellow and Plastic Surgeon Fellow came to see her this morning. They say she is looking good. The swelling and bruising are definitely increasing and will continue to increase over the next couple of days. They anticipate her finally being able to start opening an eye by Friday. I am looking forward to her seeing me again. She continues to take Morphine, but will likely switch to Tylenol with Codeine today. She will also get her catheter out today and go off the IV fluids once the Neurosurgeon Fellow comes to check on her. She is also on a steroid to help control the swelling. She has been eating very well, which is great! It was a very long night for us, but we are doing well.

Thanks to everyone for all the text, emails, posts and voicemails. I really appreciate it.

Right after surgery

We are now in our room (#241 @ Rady's Children's Hospital) and Avery is on Demerol and Morphine and is resting comfortably. She is already showing some swelling, but we've been told it is going to get much worse before it gets better. During surgery she did need some blood transfused. She also needed a lot of IV fluids because her blood pressure was really low (likely due to the Propranolol). She is eating well. We will likely be discharged on Friday, however it is all dependent on how the swelling goes.

Surgery is done!

The Craniofacial Plastic Surgeon and Ocular Surgeon just came out and told us they are DONE! She did great and is going to recovery soon. We will likely be able to see her around 2 pm. They decided to biopsy the tissue behind her eye, but they said it doesn't look ominous and we should have the results sometime next week. We are very anxious to see our little girl....

Update on Surgery

The Neurosurgeon came and spoke with us. He said her brain looks great and everything is going well. The Ocular Surgeon also came out to tell us it is his turn to go in there. It has been about 3 hours so far. Hopefully, only 1 more hour to go. Jason and I are sitting outside in the beautiful sunlight trying to keep busy with gossip mags, web surfing and iPhone games. It is hard to keep distracted. Will update again soon.

She is in surgery

They just took her away and she is in surgery right now. Mommy and Daddy are very sad right now, but we know she will be doing good before we know it. It will be a long 4 hours for us until she is out and in recovery. I will update when I can. Thanks again everyone!

Pre-op Labs & Toy Drive

Avery had her Pre-op Lab work done today. Like always, she hated the whole process of getting her blood drawn. Pictured above are all of the toys we collected to pass out to other children while we are at Rady's Children's Hospital.

THANK YOU SO MUCH TO ALL OF YOU WHO SO GENEROUSLY DONATED TO OUR TOY DRIVE!!!!

Surgery is tomorrow. It has been a long 5 1/2 months waiting for this day to come, but now that it is here it seems so soon. I will be posting updates daily for the next week or so.

Pediatrician, Spine & Ocular Surgeon Pre-Op

We met with our Pediatrician (Dr. Pickering) & had our pre-op appointment with our Ocular Surgeon (Dr. Kikkawa). At the pediatrician appointment, we learned that Avery has a loss of cervical lordosis. This is a condition where the top of the spine (by the neck) is supposed to curve outward, and Avery's does not. This is likely why she typically doesn't like to look "up". Hopefully, we can discuss this with our Physical Therapist after surgery and see if stretching this area will improve it. We also learned that her scoliosis is a 20 degree levoscolioosis of the thoracolumbar spine. This curvature is located where the spine and ribs meet. She also had her shots today....poor baby :(

Surgery is just around the corner & we are looking forward to getting it over with! Thank you again to all of you who have shown us so much love and support throughout this.

Orthopedic Surgeon, X-rays & Scoliosis

We met with the Orthopedic Surgeon today. They took X-rays of her spine and neck. She officially has scoliosis with a 20% curvature of her spine. It is pretty rare for a baby to have scoliosis, but in a lot of the cases the scoliosis will resolve itself. We will not know if this will likely happen to Avery until her next appointment in 5 months. Dr. Newton says they rarely know what causes scoliosis in an infant. He also said there is nothing structurally wrong with her neck to be causing the torticollis. He believes it may have something to do with her eyes that she holds her head on a tilt. He doesn't think the physical therapy will help much (which it hasn't helped yet). We will meet with the Optomologist again next month to research the eye issue some more. Until then, we will just wait ;-( We meet with the Geneticist in July, and hopefully she can help find a reason Avery has had so many health issues.

TOY DRIVE: Thank you to everyone who has donated so far. We have collected: 24 stuffed animals, 7 books, & 2 games. I will be collecting toys until Sunday.

Pre-Op Appointment

We had Avery's pre-op appointment today with Dr. Cohen. There wasn't a lot of new information, as we have researched so much and learned so much already (to read details of the surgery, please see other post where I describe it). She will have stitches on her head instead of staples. These will dissolve. All of the screws and plates they will put in her head will also dissolve. There is a 15% chance she will need another surgery around 4 years old.

We are very anxious to get the surgery over with. It has been a LONG 5 months!!! Hopefully, once we get the surgery over, the heart problem corrects itself, and the scoliosis & torticollis improve we will finally be done ;-) or so we hope....

A special thank you to April May

I want to give a special Thank you to my new friend, April May. She doesn't even know me and she re-designed this blog for me out of the kindness of her heart. She did an absolutely beautiful job. I want to THANK YOU APRIL!

Neurosurgeon called & Orthopedic Surgeon

Our neurosurgeon, Dr. Meltzer called today. He wants us to see a pediatric orthopedic surgeon, Dr. Newton. We are scheduled for April 13. He wants to have an expert look at her back and determine if she does have scoliosis, and if so, we will need to have an MRI done of her spine. He also informed me that the 'stuff' behind her eye is actually just what appears to be extra fat. This is likely an illusion caused by the fact that her head/eye is deformed from the Craniosynostosis. He doesn't think they should do anything about it during the surgery. We will likely still have the Ocular surgeon there, just in case.