More Updates

It's been a very busy week. I worked Sunday, Monday, Wednesday, and today. TGIF! I am tired. Tuesday and Thursday were busy days despite having them off. Tuesday Tony and I decided to meet with our insurance rep at the hospital we work for. We wanted to start the process for notifying the insurance company ahead of time regarding Riley. We want to be prepared for what things are going to cost and how we need to make sure that our insurance will cover as much of his care as possible. The insurance rep gave us the phone number to absent 8 so I could start my FMLA claim (so I can have my 10 weeks off and be protected) and a number to call to get assigned a case manager through our insurance to make sure we stay within our network of doctors and to make sure his treatment is covered. Then, we went and registered at Target and Baby's R Us. Its actually a lot more work than I thought but we had a great time picking out things for him. We bought his wallpaper border which has safari animals on it and went to Home Depot to buy paint. I will take pictures as we begin our work. We want to start paining tomorrow hopefully.



Thursday we had another OB appointment and then met with the neonatologist right afterwards. My OB appointment went well. My glucose test came back good so I don't have gestational diabetes. I had to have another blood draw to be tested for anemia and syphillus (I guess the syphillus is a state requirement). Weird but ok. The neonatologst is a very nice guy. He met us at my OBs office and really took the time to sit down and explain who he was and what to expect when Riley's born. His name is Dr. Schwer (spelling?) and he's been in AZ for 30 or so years. He informed Tony and I that Riley should be safe to be delivered at the hospital where Tony and I work at (Del Webb). He said that he or one of his colleagues will be at Riley's birth to make sure Riley is well checked out to make sure he has no other complications. He assumes there won't be but says its always good to be prepared. Assuming everything is normal and Riley feeds okay, he will be able to discharge home with me. Unfortunately, breat feeding will most likely not be an option for me but I can still pump and feed him breat milk that way. He also gave us a time line of what to expect. He says some of the things on the timeline are happening even sooner. Our timeline is as follows:



birth-2 weeks: Plastic Surgen Obturator option (a device that fits in the hole on the roof the mouth such as the NAM), nursery social services, craniofacial Team/Feeding Specialist)



2-10 weeks: Same as above plus ear, nose and throat (ENT) services and audiology services, genetic visit (if Riley is suspected to have a genetic disorder which at this point there is none suspected)



3-12 months: Lip repair and everything above in the last 2 sections



12-18 months Palate repair, 1st dental visits, speech and language services, social services/psychology services and continued craniofacial team/feeding specialists may be needed



4-6 years P-Flap Palatal Lip Repair and orthodontics



6-9 years Bone graft and Rapid Palate Expander and active dental care



9-11 years same as above



11-18 years final revisions



18-21 years treatment hopefully complete and retainers



Keep in mind that this is just a rough timeline and Riley may not need everything or may need more than what is on this timeline. When we meet with a plastic surgeon we will get a better idea of what to expect as far as the surgery timeline goes. Very informative and the man even gave us his cell phone number! What are the chances of that?!? We feel very blessed to have such good doctors on board. He also provided us the names of 2 plastic surgeons whom are in the Banner Network (the company we work for) who he recommends.



As I was sitting down to right this, the plastic surgeon actually called.....on a Friday night at 6 pm. Can you believe that?!? I was absolutely shocked but very pleased with what he had to say. He specializes in palate and lip repairs and has been practicing medicene/surgery since 1984. Very very nice man. He is familiar with the NAM device and does use it which is something Tony and I want to inquire about. He once to meet with us in the next couple of weeks. He says he has nurses that can come help us with feedings and says for us to take pictures as soon as Riley's born to get a better idea of what he will need. Tony and I are to call this secretary on Monday and will send us brochures and set up an appointmet with him so we can meet. I will post an update on that once this happens.



I know I am using some acronyms that you may or may not understand what it is. Please do not hesitate to ask me what things are. Tony and I found a really good blog (cleftstories.com) that is an excellent resource to get a better understanding of what Riley will be going through. Its a mom writing about her baby (now 6 or 7) who was born with a complete bilateral cleft and lip palate. Please check it out or at least look at pictures if you plan of seeing Riley during his first few months. I say this because the pictures a bit shocking and I want people to be prepared.