6 day hospitilization and a feeding tube later......

Alright, so I'm way behind in this blog. I actually thought about not writing on it anymore but I know there are still a few of you who like to keep track of what is going on and it is a good place to get out my feelings. Plus, if anyone is reading this that is going through or is about to embark on the cleft lip and palate adventure, I want people to know they are not alone.


So a few weeks before Riley's palate surgery, Riley started not eating quite as well and he still is not drinking which we have always had some issues with but now he has been refusing fluids almost completely. The Sunday after his palate surgery, I worked a 12 hour shift. Tony texted me about halfway through my shift to tell me he hadn't changed a diaper at all. He was having no urine output and there had been little urine output for a few days prior to this. So, Monday we found ourselves in his pediatrician's office. As we were telling her about his situation, she told us we needed to get to the hospital stat. Of course our hospital that Tony and I work at does not have pediatrics so we were diverted to Thurnderbird which is about 45 minutes away from where we live. We got checked in and ended up there for 6 days. We were discharged on Oct 30th.





While we were there, we met with a GI (gastrointerologit) doc, neurologist, surgeon, and our attending. We also had speech therapy, a nutritionist, case manager, and a social worker. We were very busy and I stayed every night with Riley. I cannot tell you how exhausting it is having your child in the hospital. Anyways, we had a barium swallow to see if he was aspirating but that was negative. He also had an endoscopy and that was negative as well. The neurologist met with us to make sure there is nothing neurologic or metabolically wrong which also turned out to be okay, and she is also running some genetic testing but we won't get those results for about a month. The GI doctor insisted on placing an NG tube (tube that is put through the nose down to the stomach for feeding) but our plastic surgeon said "no" as he just had his palate closed and recommended an OG tube (same as an NG tube but goes down through the mouth). We looked at this doctor completely astounded that she would mention such a thing. Riley already has an aversion to things in his mouth and we are having issues with him having things in his mouth. He would be pulling it out all the time. Tony and I were very insisted with a g tube (a tube that is surgically placed in the stomach) and I'm so glad that we did. Friday he had an endoscopy and then the g tube placed. The endoscopy (a scope that goes down through the mouth that looks at the tummy and the doctor was looking for inflammation).


After we were discharged, we have been trying to feed him as much as we can orally but we are having to put most of his fluids down through the tube. His feeding his still very decreased which also is concerning.



Today, we started speech therapy. It was an evaluation and for about 30 minutes we played around with different textures and different types of spoons but would only eat from his spoon and nothing that wasn't a smooth texture. So, the plan is to start very slow with adding textures such as adding fine crumbs to the top of whatever is feeding him and slowly advance him to bigger textures. We also had a follow up with his pediatrician. He has gained one pound which is probably from the night feeding he is on. We hang an iv of formula and hook him up to a machine that gives him a low continuous feed through the tube. Very stressful and I am so beyond tired. I went directly back to work and finally had a day off today and have a day off tomorrow but we have a surgeon's appoinment tomorrow for the g tube stitches....not really much of a time off.

3rd Surgery Down-Palate Closure

I am exhausted. Originally, Tony and I were planning on Riley's surgery being next Tuesday. Tony called on our authorization yesterday to check if we had approval for Riley's palate surgery and was told it was approved and that they were going to do it today if possible.

After talking everything over given our work schedules and the fact my parents are leaving next week for vacation, we scheduled the surgery for today. Not much time for preperation but we scheduled it for 1 pm.

7:22 this morning the phone rings. Tony answered it as we were still trying to sleep. A lot of tossing and turning for both of us last night so we were trying to sleep in a bit. Our surgeon's schedule was being rearranged and they wanted us there immediately so they could operate on Riley earlier. We live an hour a way and that's if traffic is good. We got ready as fast as humanly possible and drove to the hospital.

We got call checked in and watched Cars from our pre-op room waiting to speak with the surgeon and the anasthesiologist. After all that was completed, they took him away and I think that was around 10:30 am. Of course I cried. Backing up a little bit, I've been a big ball of emotions. The poor guy just had surgery a week ago from today and it's just been stressful. A lot of mixed emotions running through me. A lot of tears and trying to be strong but feeling like I"m failing. A sense of feeling like i have no control over things. Anger has popped up because I hate having to put Riley through this and damn......can't help to wonder what it would be like to have a baby that doesn't have to visit drs on almost a weekly basis and have several surgeries. Anger at those people who take for granted that they have healthy kids and get upset when they can't have more. And thankful....thankful that he has nothing deadly or any severe mental issues. Thankful that I was even able to have a child in the first place and that he has such a wonderful personality.
For anyone reading this blog whose about to have a baby with any kind of birth defect or are just starting the process, it is one of the hardest but most rewarding thing that you will ever do. I was watching Oprah (i know laugh all you want) and she had talked about finding your calling. I'm thinking a calling is trying to find a profession or some way of helping others. But then she said that being a parent is one of the highest callings. And this is so true. I would agree from the bottom of my heart that God gave Riley to Tony and I because he is our calling. And hopefully someday we can take what we have learned from him to help others.
Anyways, the operation took 3 hours. In some cleft palate cases, the palate needs to be repaired in phases. Luckally for us, Riley was able to have his repaired in one shot. The plastic surgeon said 30% of his palate repairs go home that same day. We were prepared to stay at the hospital overnight but because Tony being an ER RN and feels comfortable with taking him home, the surgeon let us go home. Of course we had to make sure his pain was under control and that he drank fluids which we gave him through a syringe.
We are home now and he has been sleeping since we left the hospital at aroun 4:30 pm. We stayed a considerable amount of time in the PACU (post op area) to make sure we felt comfortable. So far, Riley is doing well and resting soundly. Tony is out picking up Riley's pain prescription and I think all will be well.

2nd Surgery Down

Waking up at 4:30 in the am and driving all the way across phoenix (takes about an hour at the minimum given traffic) is something I wish we could do without.

Yesterday, we did just that. Of course Tony and I got no sleep....not because we were nervous but it was just one of those damn nights neither of us could sleep. I hate that. We got sleepy Riley up and ready to go.

We get lost.....and finally found our way to the outpt surgery center at 6:45 with his surgery being at 7am. We weren't too concerned knowing that these things always seem to start late anyways. We got checked in, talked with the nurse who then took us back to preop where we met with the anesthesiologist and surgeon.

The surgery was easy, it was just to fix his tear duct that they believe was affected because of his cleft. It literally took 5 minutes and the dr was out to tell us everything went well before tony could finish syncing his ipad to their wireless network. I figured this surgery would be no problem but as soon as the nurse walked away with him, my eyes filled with worried tears. Knowing we have to go through this so many more times just sucks.

Riley felt fine after we got him in the car. Thankfully for us, it is a painless surgery for the most part. We never had to give him any pain meds though they have him rectal tylenol during the surgery. He was fine although his eye kept bleeding which is normal. It looked very halloweenish.

Today he is back to normal.....except for the tooth he had fell out. We have no idea why but we are thinking it wasn't a normal tooth. We just got our referral to the dentist and will be taking the tooth in for inspection. Hopefuly nothing else is wrong!

One Year Check Up

Well yesterday was Riley's 1 year check up. It didn't go as well as planned. Riley weighs 17 lbs which is what we weighed when he went to urgent care 4 weeks ago. He's 28 1/2 inches long so he's gaining height which is a good thing.

We had a long time with our pediatrician about how Riley isn't feeding himself at all and still refuses to drink anything but his morning bottle. Also, the dr felt that he should be at least trying to pull himself up to stand so she has ordered physical and occupational therapy for him. More specialists :( Mentally he seems to be doing well which is good. I would rather have physical problems than mental ones. He got 4 immunizations yesterday and took it like a champ. I'm so proud of him and he's so strong. He has eye surgery on tuesday wo we will keep everyone updated.

Riley Is 1 Years Old!!!

I can't believe it but my baby is 1 years old. I had no idea it would come so fast. We celebrated yesterday because Tony works tonight. We had a spaghetti feast and had a great turn out. For pictures, visit my facebook page. It was a wonderful day and I'm so thankful that we have such great friends and family who have been such good supports for us.

In other news, I found Riley's first tooth the other night. Everyone kept telling me how the bottom teeth normally come in first so that's where I kept looking. The other night, he stuck my finger in his mouth and I felt something sharp. Low and behold, Riley's top left canine tooth (or what looks to be where the canine would be) is coming in. It looks more like a fang, it's very pointy and sharp.

Sippy cup transition is going so-so. He still gets a morning bottle but all other fluids go in a sippy cup. The problem is i that he doesn't like to drink much so it's hard to guage if it's the sippy cut he doesn't like or if it's just that he doesn't feel like drinking. Who knows but we will keep trying. We know it's that time to have him drinking out of a sippy cup only.

Plastic Surgeon Woes Over....Now Time For Surgery!

So after I don't know how many months of waiting for our plastic surgeon to take our insurance again, we finally were able to meet with him again to start thinking about his palate surgery. He says he is happy with the lip but will want to do another repair as Riley still has a small "split" in his lip. I think he looks great but I probably should listen to the surgeon. He informed us that Riley also has a deviated septum....I guess this is not uncommon for cleft palate babies but he will fix that when he gets bigger. The surgeon says he is ready to operate next month to repair Riley's palate. He also suggested to move Riley to a sippy cup....I'm in a bit of a panic now because we cannot get Riley to drink anything BUT formula and that is it. He won't even drink water. Yes we can put formula in a sippy cup and have him start trying to drink out of that. We also have another problem....he doesn't feed himself at all. Not even with his bottle which is hard because we have to squeeze the top so he can get the milk out. I have no idea what to do so if anyone has any suggestions let me know. I have the gentle reminder that in 2 weeks my son will be turing 1 and it is time to start weaning him We will be meeting with our pediatrician in a few weeks to discuss these issues as well but he's definitely behind. So, his office will start getting the insurance auth and then we will schedule.
As for me, I have a dr.s appointment this Wednesday for my gallbladder....if that's what it is. I suggested gallbladder cancer to my husband (yes I'm that crazy person who thinks every ache and pain is something terrible) and his response was uncontrollable laughter saying that gallbladder cancer doesn't exist....I'm just saying. HOnestly I probably just have some gallstones or something so hopefully I'll get to the bottom of this. Still have pain but nothing compared to what I felt while I was on vacation. Fingers crossed!

Vacation Gone Bad

Well, we are home. We had to cut our vacation 3 days short. All I can say is I think there is a dark cloud following us. No matter where we are, it seems bad things keep happening. It all started last Sunday. We had pizza for dinner and for 12 hours after I became very sick. It started out as mild upper back pain on the right hand side....where my gallbladder would be but in the back. I figured it was just back pain from sleeping on an uncomfortable bed. The pain felt deeper than my back since when Tony rubbed it I couldn't feel relief. It was mild pain and went away shortly after I felt it which was in the morning. Then around lunch time, it started to hurt again but worse than the first time. I went and sat on the couch, took a 600 mg advil, and then felt better. Feeling great, Tony, Tony's baby brother Matthew, his fiancee Sara, Riley, and I all headed to a driving range and picked up Papa Murphy's on the way home. I was in the middle of dinner when I felt the "back pain" again. I took another advil hoping it would go away but to my horror, it turned into severe pain. I've never felt pain like this in my life. Then started the vomiting....and not just a little. Everything I ate for dinner plus when my stomach was emtpy I threw up. It was horrible. I was literally up with this pain all night long. I couldn't get any relief no matter what I did. I took 6 total of those Advil but could not hold anything down. Then around 6 in the morning, the pain immediately went from my "back" to my upper stomach. It hurt so bad that I almost went to the hospital which was not a good thing for 2 reasons: the first being the closest hospital is not a great place to go and 2nd is because our insurance is out of network up there costing X3 as much to be seen in the er. As I was getting ready to make Tony drive me, the pain stopped and I felt better. My stomach was sore and I was exhausted but not in the pain that I was in thankfully. My called my dad who had a dr friend staying with him. I explained my symptoms and is pretty sure what I had was a gallbladder attack. Not good. I rested a lot the next day. We had a good day after that but Riley was continiously getting more and more fussy not to mention just stress going on in the family which I won't mention to protect privacy. Before we know it, we are packing our bags because we figured out that Riley has an ear infection. He was running fevers on Thursday and Friday. We gave him some tylenol and motrin to help with the pain and fever but it was no use. We called our pediatrician knowing exactly what was wrong with him. Pulling at the ear, pain to the touch, fever, fussiness......it does not take genious to figure out what was wrong. Plus, Tony being an RN we knew what was happening. We called our pediatrician and found out that due to being out of state, our pediatrician will not write for anything....not even an antibiotic because she has to see him. We were furious. Thus we packed our bags and ended up taking him to an urgent care on Friday morning when we left. Holy Cow! An ear infection......big flipping surprise. We got our antibiotic and asked for tylenol with codeine to help with the pain. We got home last night. Riley is starting to feel a little bit better but still is not feeling well and we have found a tooth trying to break through. Nice last half of vacation :(

Shopping, Relaxing, More Driving, and Family Time!

The above title pretty much sums up what has been going on the last few days. There hasn't been too much to report and I really didn't want to post a blog to say I just went shopping. Like you guys care. All I can say is that Riley has so many clothes. He went from a half suitcase full of stuff to overflowing. Carters was having a 50% off the whole entire store plus my mom got a 10% discount because it was grandma's day. Of course we had to take advantage of that.

The next day was awesome fishing. It was one bite after another and caught lots of fish. We also went and caught some fresh blackberries, a whole gallon which were made in into pie yesterday. It got cold and rainy so spent most of the evening inside keeping the little one warm. It was a great last night.

Friday was spent driving to Spokane/North Idaho. Tony's dad had surgery on his shoulder so he is all slinged up and couldn't hold his grandson but was excited to see him anyways. We spent the night relaxing which was well needed.

Yesterday was a beautiful day. Sunny and warm once the afternoon hit. For those of you who aren't familiar with the whether up here, it gets very cold at night so the mornings are quite chilly most of the time. You dress in layers here. That's why our suitcase looks like we will be gone for 3 months not 3 weeks. We had a big breakfast of biscuit and gravy and home made hashbrowns. Yummy. Riley got to meet his 2 uncles and his future aunt Sara. It was nice for everyone to see Riley. We BBQ some giant steaks and Tony made his first pie, pie crust and everything. 1 apple and 1 blackberry. Yum Yum Yum!!!

Day #5 and #6-A day of relaxing and trip to San Juan Islands

Yesterday was gloomy and very cold. It was windy and gray and too cold for Riley to be outside so most of the day I spent relaxing indoors keeping Riley warm. My great uncle and aunt came out fishing along with my dad's cousin and his wife and my uncle Jerry came out to go fishing. We let them fish most of the day which was okay because I needed to be inside with the kiddo anyways. After they left, Tony and I both caught big Humpeys. Mine was 6 lb and Tony's weighted in at 5 1/2. In the picture mine looks smaller...i was having a hard time holding mine up. My cousin Jason smoked a giant turkey and made some stuffing and corn. Mom made mash potatoes so we pretty much had Thanksgiving. It was so good and I ate too much.

Today, my rents, Tony, Riley, and I rode the ferry out to the San Juan Islands. We just drove around and had lunch at Friday Harbor. It isn't very big out there so we managed to catch an earlier ferry back. It was beautiful out there, not much to do but I'm glad that we got to see it once. Hoping for warmer day tomorrow but the cold is a nice break. The 2nd pic is the 3 of us on the Ferry ride to Friday Harbor. Now off to make some smores.

Day #4-crabbing away

Tony was in heaven yesterday, after running a few errands yesterday we started off the day with a boat ride down the skagit river. I forgot the camera so I could not take the hilarious picture of Riley in his life vest. Tony caught a picture of it on his phone so its probably floating around facebook somewhere. It was adoreable. After the boat ride, we headed to Samish Island, not to far from where my parents house. My dad's high school friend Karen and her husband Clint have a house right on the bay at Samish Island. Caren took Tony and I out to pull the pots. We only caught 6 and one of the other pots are missing. It isn't uncommon for people to come and and take the pots. After we went back to shore, Caren and Clint provided oysters, clams, and fresh crab. We finished the night with smores. I haven't made smores in years!

Vacation Day #3

Yesterday was day #3 of our adventure. Riley has been doing great. Above is his little play/sleepint area so he can stay outside with all of us. It was kind of a busy day yesterday. We went and had breakfast and came back to do some fishing. My cousin picked up my grandma and brought her out so Riley could meet his great grandma and so she could visit with the family. My cousin's daughter had a birthday party so we stopped by there for a few minutes and then headed out to see my great aunt Helen (Riley's great great aunt) and my uncle Ed. We stayed there for about 20 minutes. Aunt Helen got to hold Riley and he did awesome. I was hoping he was nice and chill for her which she was. We went to a hibachi grill for dinner and fished some more in the afternoon but no bites.

Vacation Day #2

Tony and I eating by the inlet in La Connor, WA

Riley chilling at lunch time

Instead of trying to remember everything I did during vacationa and posting one long blog, I thought it would be a lot more fun posting as I go along.

Yesterday was day #2. Riley got to meet his uncle Matt for his first time and then after he left, my parents, tony, riley, and I headed to Walmart to pick up a few things and then off to La Connor, WA which is about 20 minutes from my parents place. La Connor is a typical seaside town in WA. It's actually an inlet that we are on that's why it looks like a river in the background. Tony got his fish and chips which he was excited about. Can't beat fresh seafood I guess.....I wouldn't know because I don't like it. I had some chicken strips, mom had a small bowel of clam chowder and a hot roast beef sandwhich, and dad had a giant bowel of clam chowder. My mom decided to let Riley try some clam chowder (don't panic people, just the broth part, he did not eat any clams). Now, if anyone knows what has been going on with Riley---he will not eat passed his cereal in the morning until his dinner at 7 pm. He still will not eat any snacks, eat vegetables, or drink anything at all. We have to force stuff down him. It's weird because he doesn't fuss until he is ready to eat. Of course we figured he would hate clam chowder but grandma thought it would be fun for him to give it a whirl....and he LOVED it. He ate one of the biggest amounts I have ever seen him eat. Once my mom ran out, he helped grandpa with his bowel and then we had to order a 2nd big bowel which he ate at least 2 tablespoons of that and we brought the rest home. I couldn't believe it. That was his first time eating people foo. He didn't get sick or anything. I was a little worried about the richness but he ate it right up and no diarreah. Strange....

After lunch, we walked around La Connor which is pretty small. We looked around in a few shots and got some icecream before we left. We came back to my parents place. I caught another fish and I think Tony caught 2. It was nice and relaxing.

And Vacation Is Here!!

This is my view right now. My parents live right on the river. Tony has caught 1 salmon already and plans on cooking it for dinner.

The time we have been waiting for has arrived.....our long awaited vacation. I felt that it would never come. Tuesday night after I got off work, Tony packed the Jeep. He worked until 12 am so we left pretty much as soon as we got home. I was pretty sure Riley would fuss a lot. I takes 24ish hours to drive from Surprise, AZ to my parents house in Seedro Wooley, WA. Riley did awesome. We drove straight through....just stopping long enough to feed and change Riley, get gas, and let Enzo out to pee. Tony and I ate while we drove. We drove all night and arrived this morning (Thursday) at 12:45 am. We were very tired and Riley went right to sleep in his pack and play which he's never really done. I will be putting up pics here and on facebook. So far, we've just relaxed and visited with my aunt and parents.

Another Dr added to the list

Thursday Tony and I had to take Riley to the opthamologist....a visit we were hoping to avoid but unfortunately Riley's eye still seems to be goopy and runny so we were referred to a pediatric opthamologist. So, after working a late night, Me and my boys got up and headed to Mesa for his 8:40 am appointment. I don't even wake up at 6:30 to go to work and I worked until 10 pm the night before so I really didn't get that much sleep. It's very difficult to fall asleep after working a day in the er which happened to a busy day.
Anyways, after sleepily making the drive we saw the opthamologist. He was very nice and did confirm that Riley has a clogged tear duct that will need to be opened up surgically unfortunately. Unfortunately, he cannot do it at the same time as when Riley's palate is fixed as Cardon's hospital does not allow inpt eye surgery that can be done outpt. It literally is a very short procedure....about 5 minutes but will have to be put all the way under via a mask so no intubation which is good. The good thing is that the opthamologist said that Riley's eyes look great and no problems yet have been spotted which is something we were nervous about as Tony and his side of the family have eye problems. Tony had to have a surgery when he was 4 to realign his eys.
Tony is such a wonderful husband. He set up a surprise babysitter for Thursday night so we could have a date night. He was a little nervous because on Monday moring I got really sick and started vomiting at like 2 in the morning. There was absolutely no warning what so ever. I felt fine all day on Sunday at work. I only got about 3 hours of sleep and had to be back to work at 8 Monday morning. I did go thinking I must have eaten something bad but then I got very achy and could hardly sit or stand still because my body hurt so bad. I spent all night on the couch on Monday and threw up everything I ate and felt horrible Tuesday but luckally was keeping food down at that point. By Thursday I felt fine like nothing happen and we were able to go on our date. We went to Chilis and then went to Harry Potter. I liked it but Tony only thought it was so so. It was a romantic gesture since we don't get out much alone lately. I'm excited to have grandpa and grandma back down for the winter so they can babysit :)
Only about 1/2 weeks for our first vacation as a family....a road trip up to WA and ID to visit family and friends!

9 months

Wow I can't believe Riley turned 9 months old last week. Time goes by too fast. Riley had his 9 month check up on Thursday. He is now 27 inches long and 16 lbs. He hasn't gained much weight but grew 2 inches. He's going to be long and lanky like his daddy. Riley's eating is better but now suddenly he HATES vegetables and loves fruit. It was opposite last week. Anytime we put him in his car seat he laughs. It's really cute but strange that he likes his car seat so much.

Tony and I have been busy working and spending our off times together. Its been really hot and our pool is getting to the point where its not refreashing getting into it because its warming up as well. I still like having it because I can float around in it and it still feels better than the hot air outside. We enjoyed our 4th of July with some good friends though Riley fell asleep before the fireworks started We are busy planning our trip up north in August and we are looking sooo forward to it. It definitely cannot come fast enough. Later this month we are meeting with an opthamologist for Riley's tear duct to see if he needs a stent in it. So far no ear infections or illness *knock on wood*.

8 months and the journey has just begun

My how time flies. Riley turned 8 months last week. He is doing well. As you can see he enjoys his food anyplace but his mouth. Last night he thought it would be funny to spit his food out but as soon as daddy was called over, he ate like a champ. Daddy handed the food back over to mommy and he kept spitting it out. Tony ended up finishing his feeding. He is such a daddy's boy! Riley's lip is healing well and the scars are fading. We are very happy with the repair but are anxious for the upcoming surgery to fix his palate.

The other night I went back and looked at pictures of Riley from his pre lip repair days. I don't know why but when I looked at them I thought he looked so different and I was almost taken aback that he once looked that way. Then, I felt guilty. When he was born, I saw right past his lip and loved him and thought he was the most beautiful baby. I still think he is the most beautiful baby but I was stunned when I went back to look at his other pictures. It is amazing how much one surgery has changed him. I can't lie about how I felt while looking at these pictures and I feel bad when my heart skipped a beat. It's just a gentle reminder that we have a long way to go but I love him so much and wouldn't trade him for the world!

Plastic Surgeon Woes

We purposefully picked our plastic surgeon for a few reasons:
1. He denied he was leaving his practice
2. He wasnt plannig on retiring soon
3. He had good background and experience

It was important to us for Riley to have continuity of care. So much for that. We got a call saying that Dr. Goldstein is leaving the practive and is also living the valley and is no longer seeing any patients. No letter or any warning at ll. Im really bummed because when you find a good physician, especially with something that is so specialized. It's not like I can pick some Joe Smoe physician. That was a little bit of a set back so we are a little bummed out. Our case manager is helping us find another one so we are keeping our fingers crossed. There is another plastic surgeon who is in the same practice so our case manager is looking into the availability of him.

And thanks Courtney for the advice. I didn't even think about giving him avacado but that is filled with healthy fats so I will give that a try.

Busy Busy Busy

It's been crazy how busy Tony and I have been lately. It seems like if its not one thing then its something else. Riley had his first ENT (ear nose and throat) appointment as most cleft palate babies have to have tubes placed in the ears. With cleft palates the eustacian tubes do not close all the way which can lead to a build up of fluid in the ear which causes ear infections. We drove all the way to Mesa-took us about an hour to get there. We waited over an hour past our appointment time and was with the physician for maybe 10 minutes. She said his ears looked fantastic and was very shocked that Riley has not had an ear infection. She asked us to come back in August to have his hearing tested and to check the movement of his ear when there is sound. If he needs tubes, she will try and coordinate at the same time as his palate surgery. We also asked about his tear duct as this was affected as well on the right side but she referred us to an opthamologist. Our insurance is great for coverage but a pain in the butt to get in with a new physician. We have to call our primary who then calls in the referral and then we call and make an appointment. We plan on driving up to Idaho and Washington in late August so his ENT follow up once we get home from our trip.
Tony and I are continuing to work full time. My parents are leaving on Friday to go back to WA for the summer so it's a little stressful not having child care in place. Riley still continues to fuss and cry when we try to feed him anything but his rice cereal or formula. We are trying to get his weight up because if he is underweight at the time of his surgery the surgery will be postponed. If anyone has any suggestions, let me know!

Sad arguments

Lately on my facebook page, some of my friends whom I shall named unamed have been posting politcal opinons. I have no problem with this.....however some of the comments that follow the original postings are pathetic. For example, people are making comments that simply state things like Tea Party members are stupid. Okay, but why?

Why is it now that when someone has an opinon you are automatically called stupid or ignorant or some other form or deragory comment. I feel that people are quick to put down someone but can't defend their argument in an educational matter. It doesn't matter what topic it is people have opinions about subjects but can never back up their arguement. I used to enjoy debating arguements but I'm tired of people being so mean just because you don't agree with their stance.

This leads to the point of this post. Something important I learned this year after having Riley, is not to have an opinon on a topic you know nothing about. For example, one of the most frustrating comments people made to Tony and I when we found out is "oh that's easily fixed". Yes to someone who isn't educated about this subject, it seems that it is such an easy procedure and he's fixed. Nevermind the fact that he has to have another lip repair, at least one surgery on his palate, at least one nose revision, speech therapy, tubes in the ears due to the common ear infections that are commen in cleft lip palate babies, and a stent placed in his tear ducts because this was also affected with his cleft. Yes it is fixable. Yes it is not fatal and yes it could be much worse. However, people cannot fully understand how stressful this situation is until you are actually going through it. I alway thought I would knew what to do if there was something wrong with my child. I thought I'd new how I would react but I reacted in a completely different way that I thought I would. As a social worker, the experience of having Riley has made looking at my patients and families differently. It has improved my practice and my life experiences. To summarize, you if you going to argue a point or be supportive for someone try to educate yourself first.

New front yard, no more constipation, and 1st Easters

Yes, I know it's an interesting title. It's been a busy couple of months. I have finally uploaded pictures of our front yard. Before it had lighter color rock and sporatic, ugly plants planted. Our front yard looks 100 times better and we are enjoying it.

Riley is doing great. He's been having constipation problems for the past few months and I think that we are getting over that. The pediatrician told us to increase his fluids between feedings. The problem with that is Riley hates every type of pedialyte and also hates apple juice. We even tried to dilute the applejuice but that didn't work. Developmentally, he is doing well. He's making the funniest expressions. For one day, he kpt his face in an O shape and the other day he found his tongue and kept sticking it out at everyone. Not fun for when it was time to feed him his rice cereal. We just moved Riley to mixed grain cereal for a week and then we get to start him on jar foods next Sunday. I think we are going to introduce apples first. Riley also got to go to his first b-day party on Saturday. His BFF turned 1 on Saturday.

Yesterday was Riley's first Easter. Unfortunately, he's a little too young to put together an Easter basket or color eggs (although grandma colored eggs). However, he did get his first Easter bunny. You can tell that he isn't a big fan of it. It sings If Your Happy And You Know It and claps but when we turned it on last night, Riley just glared at it. We didn't do too much. Tony and I actually had a Sunday off together so we spent the day at home relaxing. We did have a very very yummy prime rib dinner at my parents and then Tony and I came home and watched the new Harry Potter movie. It was an enjoyable night and sure nice to be with my boys for the weekend.

Another milestone and 6 month well check

I think one of the hardest things about being a working mom are the "firsts" that I've missed. Wednesday, Riley figured out how to flip onto his stomach from his back. Of course he does this while I'm at work. It was still amazing to see and he did it for me when I got home later that evening. What a stinker. He loves his mommy but there is no doubt in my mind that he is a daddy's boy. They are so cute together and my heart fills with pride when I see them together. Riley had his 6 month wellness check yesterday. It couldn't have come at a better time since the poor thing has been pooping nuggets. He happened to poop right before the dr walked in so I was able to show her. She suggested to increase his fluids so to give him pedialyte between feedings. It's starting to get warm down here and he is becoming more active thus the need for more fluids. He's still on the small sign but seems to be developing normally. The dr said that he is a little underweight and gave his a layout of a new feeding regimen. We will be adding oatmeal to his diet this weekend. Right now we have upped his rice cereal and he's eating about 4 tablespoons of it (before I add the milk so it is probably twice as much). He seems to be doing well with it. He's now just a little over 25 inches and weighs 13 lb 14 oz. Yesterday evening, Tony got Riley's footprints tattooed on his arm. It looks really good.

6 months old and almost 6 weeks post op

I've been really bad about keeping up on my blog but the last few weeks have been busy. I have been sick for the last week and a half and have been so busy with work. I can say that the last 6 months have been such an emotionally charged 6 months but I wouldn't trade them for the world. Tony and I are so thankful for how Riley's surgery has come out. The conformers (the plastic thing that was in his nose that kept his nostrils symmetical) were removed yesterday finally. We are excited and plan on having his 6 month pics taken at Walmart to show how different Riley work. Tony and I have also started Riley on rice cereal. For those of you who do not have a baby with a cleft palate, moving to solids is a bit tricky. Because there is no palate, large amounts of food tends to come out the nose. Riley also sneezes frequently resulting in the spray of rice cereal shooting all over me, Riley, and the kitchen floor. I have gotten smarter and will place his bib over his nose when I can tell a sneeze is coming on. My best advice if someone is reading this that is going to have a cleft palate baby.....invest in a ton of bibs!!

In other news, Tony and I got tired of our front yard and so we (or I should say Tony and my dad) redid our front yard. We just got done with it Tuesday which was also Tony's 29th birthday. It looks beautiful. The only pics we have are on Tony's phone so I promise to take pics of what it looks like now and post it on my facebook page shortly.

Yes We Are All Still Alive

know I know. It's been forever since I've blogged. It's been quite the (almost) 2 weeks since Riley's surgery. Between Riley recovering from surgery, both tony and I alternating caring for out little man while working full time, and both being exhausted I just have not had the energy to blog. I took 2 naps today....2. That is a world record for me.

I'm so pleased to inform everyone that our little guy is doing so great. I will post a pic taken today which is just 2 days shy of being 2 weeks post op and I am posting his post op daily pictures on facebook. The first 3 nights Riley would wake up and fuss of course. He had only 3 doses of tylenol with codeine and only 2 doses of regular Tylenol. Usually given at night time to help ease the pain so he could sleep better. I would say by day 3 or 4 he was almost back to himself. We are so pleased with his results. Riley had his first post op appointment yesterday. The plastic surgeon said he no longer needed his arm restraints which we are very happy about. He did not like them. The surgeon said he's very happy with the results and Riley seems to be healing well. The nose conformers are still in (helps hold the stitches in place) and will probably fall out in a few weeks. The surgeon thinks that he will not have to have any further lip repairs which is nice but still expects at least 3 more surgeries which we already knew about. His nether region is also healing well. Here is his new look almost 2 weeks post op:

Home safe and sound!

Before and after surgery....please find my facebook link if you would like to see more pics.

Tony and I woke up at 3:30 this am to take Riley for his surgery today. I worked last night until 10 pm and it was a 12 hour day. I was exhausted when I got home and then didn't sleep to today was a rough day in many ways. I can honestly say I'm dead tired. I don't even know how I am still awake.

We got to the hospital a little before 5 am and got registered. We then went upstairs and waited to go back to the presurgical area where they take vitals and the surgeons come and meet with the pt. We had a very nice anasthesiologist and was very calming to talk to. I must admit I was a bundle of nerves and had already cried before even getting to the hospital. Then finally it was time to say goodbye. It was hard to believe that my baby would be coming back to me in a few hours as a whole new baby. Of course seeing him taken back to surgery was hard and I cried of course. I tear up just thinking about all those mixed emotions....then throwing being exhausted on top of that was too much.

Tony convinced me to go out to breakfast at Cracker Barrel which was about 5 miles away from the hospital. He reassured me everything was going to be okay and that there was nothing we could do if something went wrong anyways. He had a point and honestly sitting there would have been harder I think. So, I hesitatly obliged and enjoyed a nice french toast breakfast and hot tea as it was actually very chilly this morning. We looked around the store part for a while and then headed back to the hospital where we waited around for maybe another hour at the most. Both surgeons said he did fantastic and had tolerated both procedures very well. It was such a relief. We had to wait about 15 min. before we could go back to see him. Strangely, I didn't cry. I was just so relieved that he was done and safe and sound.

We had to hang out in the PACU for about 2 hours to make sure he recovered okay post anasthesia which he did and then they let us come home which was a relief. So we are home safe and sound. I will try and update with pics frequently. I wish I could make this longer but I really need to go rest. Thank you for all your support and prayers. It is very much appreciated.

Surgery is scheduled

The time has come. Riley's lip and hypospadius repair is this Monday at 7 am. We have to be at the hospital by 5 am to get all the presurgical stuff out of the way. Riley is having his operation at a hospital called Carden's which is an hour away from our house which means we need to be out the door at 4 am. I work the night before in the er so I won't get home until 10:30. I'm going to be very tired but I don't think I'm going to be able sleep much anyways.

I have a lot of mixed emotions. I'm very excited because I want to get it over with and I want him to have his lip fixed. I'm scared and anxious because I don't want anything to happen to him. I know that this operation is safer than driving home from work but there's always that risk. I love my little guy and will think he is beautiful no matter what but I'm so used to seeing him the way he looks now.

I will try and post pictures as soon as soon as I can. I plan on taking a few and posting them so family and friends can see. I will also try to keep everyone updated if I have access to internet. Please keep my little man in your thoughts and prayers.

4 month well check up

Riley had his four month well check up. Things went well. The pediatrician is great with him and says that while he is on the small size, he is developing very well. I guess his head circumference is only in the 10th percentile but she says she is not worred as he is developing the way he is supposed to. I'm relieved to hear this as we are nervous for developmental issues. He got 4 immunizations--3 shots and 1 oral. He did well and was pretty tired the rest of the day. He weighs 12 lbs 7 1/2 oz and is just over 23 inches long. I decided I should call and see where the plastic surgeon and urologist is with getting our auth. The urologist rep is out of town on a family emergency of course and the plastic surgeon rep said she had no record that we met with the surgeon last week. I told her she needed to talk with the surgeon. So frustrating. I just want to get this over with!

And thanks for your support Darcy. It's nice to have a contact of someone who has been through this!

4 months old and ready for surgery

Well kids-the time has come. Tuesday we were informed by the plastic surgeon that Riley is ready for surgery. Tuesday we had our appointment with the plastic surgeon, orthodontist, and the urologist. It was a very busy day.

Our plastic surgeon met with us at Barros which is also where the orthodontist is. We met with the plastic surgeon first. He explained briefly what the surgery will be like. He informed us that it usually is a same day surgery but we will be approved to stay overnight. It will all depend on how well Riley feeds and his pain control. We figured with his hypospadius surgery as well he will probably stay overnight. We also found out that we will be operating out of Carden's which is all the way in Mesa but that's okay. It's a new hospital and that is where the plastic surgeon has his "special" equipment that he needs. The orthodontist met with us and just congratulated us about the upcoming surgery. As we were leaving the nurse practitioner walked in to introduce herself. Tony thought she was okay but she irritated me. She basically said that this isn't my fault and that I need to take folic acid next time I get pregnant. I kindly explained to her that I was taking folic acid way before we even bot pregnant because we had been trying for so long. She also said that Tony and I should get genetic cancelling and Riley will need genetic counselling when he gets older. She also informed us we needed to meet with an ENT because most cleft lip and palate babies need to have tubes placed in their ears due to the increased risk of ear infections. I kindly explained that my husband and I are both in the medical field and that I felt we had all this needed information. They wanted us to meet with the social worker as well but I explained that I was a medical social worker and that I felt we did not need one at this time. Riley was weighed and measured and he is 12lbs and 23 in. long! He's doing awesome.

We drove back to Surprise to have lunch, were home long enough to feed him, and then drove about 1/2 hour to get to the urologist appointment. From his standpoint, Riley is also ready for surgery. Basically Tony and I are waiting for insurance approval on both procedures and then the urologist and plastic surgeon will coordinate the date. We are hoping within the next 2 weeks!!

Upcoming sugery

So yesterday was Riley's last appointment before we meet with the surgeon next Tuesday. I must honestly admit that I am getting a little nervous....no I'm lying. I'm getting very nervous. I know my husband is reading this and shaking his head. As Riley's urologist put it: "going under anasthesia is safer than getting into your car and driving". I know this is true but I can't help but be nervous. The thought of sending by baby into surgery just scares me. I love my little man so much and I guess it's the mommy in me that wants to protect him. At the same time, I'm so ready to have it over with. I hate having to hold him down while Tony tapes him up and put his NAM in. His screams stay with me because I know it is uncomfortable for him.
Also next Tuesday, we are meeting with his urologist to take a look at how his hypospadius is and get an idea of how it will be repaired. Poor baby!

In other news, Tony and I just got through watching Julia and Julia. For those of you who know me, I can't cook too well. I'm getting better but I'm still not even close to being able to call myself a cook. This movie did inspire me to pick one of my cookbooks and cook through it regardless of what the receipie is (although I HATE seafood and may skip that section because I can't even stomach it). We will see though. My schedule is crazy but I think if I spread my cooking out I can accomplish my goal. Any tips from people who actually can cook??

The life of a working mom!

Oh how I wish I could stay home with my baby! Riley has both giggled and rolled over (although he fails to do it anymore) for his first time for his daddy. I love my job but I love being a mommy a whole lot more.

I look back from my last post and laugh when I said I wanted to work out 6 days a week. I did 5 last week and 4 this week. This is still pretty good in my eyes but I need more hours in a day to get the things done I need to.

Riley's bedtime routine is doing great! He's only had one bad night since I've started his routine. He sleeps all through the night and wakes up between 7 and 8 every morning. Riley is following things a lot better with his eyes and making better eye contact. He is also holding his head up completely now and isn't nearly as wobbly! Although he is a bit too small still, I bought him a jumper because everytime Tony and I hold him he's constantly moving his little legs in a jumping motion. Here he is in his new toy!

One month til we meet with the surgeon

We took Riley to the orthodontist again today. It was pretty uneventful. Just a pinch on his stints and a little time in the "lab" to tighten one of the stints back up and we were on our way. The orthodontist did mention that she is very happy with how his nose looks and thinks we only have a little bit more stretching to go before surgery. We have an appointment next Tuesday and then we have scheduled an appointment with the orthodontist and the plastic surgeon together feb 1st. I'm excited but also very nervous. I tear up thinking about how much pain our little guy is going to be in as we are doing his hypospadius surgery at the same time as his lip to minimize anesthesia use. I'll be glad when it is over.

I have been feeling a bit overwhelmed these days. Our house has been a disaster and I'm embarassed to say, half of our Christmas decorations are still up including the tree. I"m ready for it to be done. I can't seem to keep up with the house, taking care of Riley, and trying to loose weight. I started my exercise routine the day before yesterday. I'm alternating between an hour of wii fit with an hour of zumba dance 6 days a week. I can't work out after a 12 hour er shift and luckally I only have one of those a week. Tony is helpful but he's been very tired as well. He just got over a cold and still is in the "post sick" phase. Both of us have been in a haze.

I did start Riley on a bed time routine on Monday. I change his diaper downstairs, then take him upstairs to change into his pjs, massage that johnsons bedtime lotion on him, feed him his last bottle, burp him, read a story, and put him down while I turn on his cd player with lullabyes on it. So far so good. He fusses about 5 minutes and then right to sleep he goes. I start this anytime after 7:30 and he sleeps until at least 7 am. I hope he continues to do this good.

The Holidays Are Over

I can't believe how time flies. I know I haven't posted in like....forever. But with the holidays it's been a whirlwind. I'm pleased to announce Riley is doing well with his Nam. No updates though as our appointments are just readjusting the stints and we actually got this past week off from going. Here is an update of what he looks like now:

The holidays were great but busy of course. My sister flew in the 18th of Dec. My hubby and I both worked so it was kind of crazy trying to visit and work plus take care of the kiddo but its so nice to have family around. Christmas Eve Tony's parents came over along with my parents. We had pizza for dinner and then his parents and us went for a walk to look at Christmas lights. Riley fell asleep almost immediately. Christmas day was nice. Before Tony's parents came over, Riley had his first stocking.....and then fell asleep and pretty much slept all day. We think he is going through another growth spurt. The 1st pic above is him before he passed out. The rest of us enjoyed opening our presents and preparing dinner. It was pretty much a Thanksgiving spread. It was very good and the turkey was moist. I got Wii Fit Plus for Christmas and everyone could not stop playing it.

The day after Christmas I went shopping with my mom and sister. Got some great stuff at Bath and Body Works. Love that store. After we got home, we ordered pizza again (going through a pizza phase I guess), watched Shrek 4 which I got for Christmas, and played more Wii Fit. The rest of the week I worked. Tony got sick and was very worried about Riley and I getting it but so far so good (fingers crossed). My parents, sister, Riley, and I went to Benihanas for dinner. It was delicious. We went to bed at 10 pm which sucked. I remember back in the day where I could stay up til the wee hours of the morning. I guess that's what happens when you become a parent :) Riley did roll over for the first time today on a completely flat surface and lying completely on his stomach. I missed it of course and he wasn't able to do it again. Within the past few weeks he has become very vocal and smiles away at people. It's so cute. I will be adding a bunch of photos to my facebook page with in the next few days so feel free to look at the rest of our photos we've taken this past month.

2010 is a wrap! In Summary:

January-took my 2nd round of clomid

February-found out I was pregnant on Feb 17th with 4 pregnancy tests, went for a trip to Rocky Point

March-Tony turned 28

April-Our close friends welcomed their first son, Logan

May-Started feeling fat from pregnancy

June-I turned 28

July-Found out Riley ha a bilateral cleft lip and palate, took a trip up North for a week to visit our families

August-Started feeling even fatter, had my baby shower my department at work threw for me

September-Went to San Diego to visit my brother-in-law

October-the 2nd of October we welcomed our first son, Rile Lawrence Marchelli

November-Started NAM treatment

December-Riley's 1st Christmas

Happy New Year Everyone! May 2011 bring happiness and many happy memories!