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.

Thank God for Vacations!

I could not have asked for a better time for a vacation back home to see our families. Tony and I were surrounded with nothing but love and support from our families which is helping us through this difficult time. We got a chance to clear our heads and got to enjoy our time. We left last Wednesday and got back late last night. We flew to Seattle last Wednesday where my parents met us with a car my dad let us borrow and then drove to Tony's parents house in Priest River. We visited the first night and just relaxed in the nice cool weather which was a huge relief! It felt good to be on the cooler side :) Thursday night we went to our favorite steak place, Wolflodge but was disappointed. They raised the prices and the steaks weren't seasoned as well as they normally are but it was still okay.

Me and Tony enjoying a steak dinner....and Riley too!

The next day we went and into Spokane and went to Baby's R Us to look at baby stuff with Tony's parents so they could see some of the stuff we picked out. Tony's baby brother Matthew and girlfriend Sara came along so it was a wonderful day. Got to enjoy Taco Time and a nice ig huckleberry ice cream cone....I've probably gained a few unnecessary pounds on this trip but can't pass up my favorite foods only found up there. We had a picnic the next day and went to the highschool in Priest River (where Tony and I met) so him and his brothers could fly their remote control planes.

Here's me standing outside waiting for the guys to finish flying their planes. I am almost 26 weeks in this picture. Afterwards we enjoyed a delicious BBQ. Tony and I relaxed and made cookies and ate a cake with homemade frosting that Tony's dad made. It was fantastic. Tony taught me how to play crochet (however its spelled but got my but kicked). We also got to see Tony's other little brother, his wife, and met our nephew for the first time. Unfortunately, we had to leave the next day but I was looking forward to seeing my parents.

We arrived at my parents house and had some family stop by. Just visited and hung out. The view from my parents place is amazing....right on a river. It was awesome and the guys had a blas hitting golf balls into the water. We tried to fish but caught nothing. The next day we had a BBQ and more family stopped by. Then had to leave the next evening. Here is a pic from my parents place.

I was sad to come home but was thankful we got a vacation at all as we were able to arrange it without taking any PTO from work.

In Riley news, Tony and I have an OB appt next Thursday and will be meeting with the neonatologist for the first time right after our OB appt. His office was kind enough to have him meet us at our OB so we did not have to drive to his office. I will post more information as soon as I know it. I'm getting bigger and bigger everyday and Riley is very active.

Riley update

I don''t have a whole lot of news. I had my first ob appointment since we found out about our little man. Our ob says obstetrical wise there should not be a problem delivering at our hospital but would like us to talk with our neonatologist just to make sure he feels its safe as we are low risk for any other problems for Riley. However, I still am nervous since we were low risk for having a bilateral cleft lip and look what happened. I had my glucose screening today and just as long as it comes back negative everything should go as expected. I plan on sitting down with Tony within the next few days to see when a good time would be to schedule our appt with the neonatologist. We want to get things moving so we can further prepare ourselves for what is happening. Tony has found a wonderful blog:cleftstories.com. Its about a little girl born with the same thing Riley has-bilateral cleft lip and palet. It was awesome to read this blog and I would recommend it for those of you who want to get an idea of our road ahead. It's not an "easy" fix and we do have a lot of things to be concerned about. This blog solidified my feelings and made us feel like we aren't alone. In many countries, babies born like this are recommended to be aborted. I do believe in abortion but only for severe cases. This is not something we want to deal with but again, Riley should hopefully be a normal litle boy with a facial deformity that can and will be fixed.

As for us, emotionally we have our ups and downs. I wish I could say that I'm over crying and I'm over the anger but I'm not and don't think I'll ever be "over" it. We are, however, coming to the point of acceptance and learning that life still goes on. I love our little man so much already and no one wants to see someone they love suffer, be in pain, or be viewed as "different". Yes, Riley is going to look "different"' at birth. Yes, it will be a little scary meeting him and seeing his face for the first time. I'm learning that its okay to be scared. At the end of the day, Riley has 2 parents that love him more than anything and will give him the best care posible. Everyday is a struggle and I have to find my inner strength everyday to deal. Tony has been awesome at communicating his feelings and giving me update on what he has learned. He has been a big supporter and I coudn't do this without him. Also, to all of our friends and family who will love Riley regardless of how he comes out.

In happier news, we leave tomorrow for our vacation and we are very excited to be able to spend time with family right now. I will post pics and updates when we get back. Please feel free to ask me any questions you have on your mind. To me, knowledge is power.

What It Feels Like To Be Told Your Baby Has A Birth Defect

Today I was excited for our follow up ultrasound. We got to see our baby again and it was just to make sure everything looked normal. Tony and I both had a bounce in our step and had conversations of what our baby would look like at 24 weeks. And it's always nice to confirm what the gender yes....and yes it is no doubt a boy. As we were going through everything, I took a deep breath and smiled when everything looked normal. The baby was moving around and everything seemed to be okay. But then we looked at his face. The ultrasound tech announced that our baby as a cleft lip and palette. Not only a cleft lip and palette but a bilateral one which is the more severe of the palettes. Tony and I both sat there and then my eyes filled with tears when I realized that something was wrong with our baby. You always hear of these things happening and we see things everyday in our job but never think it will happen to you.

Yes I know its just a cleft palette and yes I know it can be fixed. But it is never easy when your told your baby may need multiple surgeries after birth. I know its not nearly as bad as a baby having down syndrome or some other bad defect but its still not easy. We were immediately sent in to the doctor on staff (we were sent out for our second ultrasound). A nice guy who basically told us what our next plan of action will be We will be meeting with a neonatologist (a doctor that works with high risk babies after they are born). After this, we will be referred to plastic surgeons and start putting together a plan for after Riley is born. He will likely need to be fitted for some type of prostetic to help him feed until his surgeries are complete.

Let me say it is a blessing that I have such an amazing husband. He sat next to me while I cried and held my hand the entire time we talked with the doctor. I am so grateful for him and the support I've been getting so far today. I know everything will be okay in the end but it's still hard. I will keep everyone posted.

Almost 24 weeks!!

I haven't taken any pics this week but I will soon. We leave a week from this Wednesday to head up north and I promise to post some pics when we get back.

We had another Drs appointment yesterday. We started talking about a birth plan and of course my crazy fears of any type of birth plan. I may work in a hospital and have no problems all sorts of crazy thing. I DO NOT make a good patient. At all. My palms get all sweaty and I have to turn my head away just when I have blood drawn. I'm really trying to invent a way in which I can just have the baby magically appear but have not had any successful ideas. Any suggestions would be appreciated :) Baby's heartbeat sounds good and the doctor says I am measuring well. He does want to send me out for a higher level ultrasound since the first one we had was not great and the doctor says it was hard to get the measurements they needed of the organs. We do that Wednesday. I'm actually kind of excited I keep hearing all these horror stories of how people they are told are having one thing and they end up with the opposite. So I'm glad that we get another ultrasound just to make sure we are having a boy :)