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 :(