Wednesday, August 18, 2010

Please Don't Feed the Mom

You have been warned! I finally got fed up about being over weight and the diets I have tried over the years to shed the pounds. I have never been successful. Since puberty hit I packed on the pounds. Found out my insurance covers the Lap Band procedure, so after lots of fun tests I found out I got approved. My surgery was two weeks ago and finally starting to feel better physically. Still a bit sore at times around the area of my port.

The first week SUCKED!!!!! Not only are you in pain from having surgery but you cannot eat anything. A clear liquid only diet. Which for the first day or two is not a problem cause you feel like shit.

Oh and not only was I recovering from surgery but my damn period who had disappeared for a few months decided it was time to show up two days post op. REALLY!?

My poor husband and kids have really bared the brunt of my antics. I have not been the best person to live with the first week and half. When week two rolled around I was never so damn happy to be able to eat mashed potatoes or scrambled eggs. Yes, I have graduated from clear liquids to mush. I can have baby food! Screw that! I would rather starve. LOL! Oh wait! That's what I'm doing at times. LOL!

So I'm getting into my third week and I can start having over cooked veggies and over ripe melon type foods. Whoo hooo!!!!

Been almost three weeks with no soda and I snapped today. Snagged some soda from a co-worker. OH hell that was wrong to do! I have been burping all day. And the weird thing. The first drink wasn't orgasmic like I thought it would be. It actually felt weird to be drinking soda. (Yes Jason I drank soda...Leave me alone!)

I dream of pastrami sandwich's, pizza, PBJ sandwich, some cheese and crackers. Oh sweet hell!

But I go for a follow up with the doctor on Sat. and will get weighed in. It's so crazy that I don't really feel like a lost any weight. But with my special diet I have to have dropped some weight. Two days post op when I weighed in I was 262 pounds. Bets on how much I have lost in two weeks??

The other negative since this surgery is my stomach has been so distended at times from gas, but not always. But then again my gut has always looked like I was about 5-6 months pregnant. I will not miss my gut, the sooner that mess is gone the happier I will be.

When all is said and done I hope to have lost 100-110 pounds. I'm excited as hell, but it feels weird that I will be shedding all this weight and be "thin". That seems like such a foreign word to me.

So my thin journey begins. Please don't feed the mom.

Tuesday, August 10, 2010

Connor Update

It's been almost a month since we announced that Connor was suppose to be off the vent 24/7. Well, there is no update. UGH! Head shaking.

I knew a few months ago there was some confusion on the doctors orders. My understanding was before his July appt he was already suppose to be off his vent 24/7 and that the July appt would be a follow up how is it going. According to our nurse who wrote the orders three months previously he was suppose to be on his vent from 4 am - 8am. And that the doctor didn't write the orders to totally remove him.

Okay, well I didn't read the order so I went with what she said.

Well, this appt Jason forgot a nursing order sheet and verbally told our day nurse the instructions. Normally, this is fine. They write up the order sheet and send it into the doctor.

So, I'm asking the night nurse how he has been doing at night. There were a couple times she said he was low and put him on his vent. Didn't think much of it.

Well a couple weeks ago she tells me she is still putting Connor on the vent from 4-8am.


I ask her why and she says well there was no order for it. ARE YOU KIDDING ME!!!!

So basically, Connor has only been off the vent 24/7 about three days a week. Friday morning until the night nurse comes back on Sunday night and 4am rolls around.

Well we have the orders now written and waiting to get them back to take him off the vent 24/7.

Of the time he has spent off the vent 24/7 in our care he has done well with his saturation's. But I'm a little concerned about his heart rate that we will need to discuss with the doctor.

I'm not sure if it's normal for a little kid but in a deep sleep Connor's heart rate goes into the 50's. Is that too low? It is low according to the pulse ox we use and it sets off the alarms every time I spot check him.

Have some more updates later. The girls start school on Thursday. We have not heard from the school regarding Connor so he will start the school year with home schooling.


Thursday, July 15, 2010

Connor's Journey

Well in a little over three months Connor and his sisters will be turning 7. It's amazing how far all three have come since their early arrival at just a day past 25 weeks gestation.

All three had a rough start from intubation, brain bleeds, tons of medications to keep everything going and functioning. Being switched from a regular ventilator to an oscillator and their little bodies shaking from the air trying to be pushed into there undeveloped lungs to get them to expand. We never knew what to expect one day to the next in the NICU with these little ones we had been blessed with. Never knowing if we should rejoice or prepare to plan a funeral for a little life cut short.

Everything was looking good after the first few months and it was looking like we were going to go home with all three of our babies. The full extent of the side effects of their prematurity unknown. That would be tackled as they developed and issues arose. But looking back Connor wasn't keeping up the pace that his sisters were in the NICU. We brought Chloe home in March 2004 and were rejoicing that our babies where finally making the leap to come home. Only to be gut checked not soon after that Chloe may be the ONLY ONE ever coming home.

Not only Connor but Gwynne became life threatening ill and the NICU staff had no idea what was making them sick. In April 2004 they were both diagnoses with Cytomeglovirus AKA CMV. There bodies had already been riddled with various infections and with this we saw the two of them put back on the ventilators again. Even then Connor was not able to maintain healthy oxygen or CO2 levels. Connor's suspected neurological issues went from bad to worse if he survived this illness.

Connor was never able to ween off from the ventilator after this. His O2 and CO2 levels began coming up, but the vent settings weren't coming down. The talk of a trach and transferring him to the PICU began. A few short months later the NICU said he had out grown their care and expertise and need to be cared for by the PICU. So off we went. We fought against the trach, but it got to be too much fighting with the PICU over the large doses of sedation Connor was being given to keep him calm and from pulling out the intubation tube. Not to mention the medication that completely paralyzed him. It is so hard to see your little baby like that. So we signed the paperwork for the trach to be placed.

The first attempt of placing the trach failed. The hospital Connor was at was ill equipped with the things the ENT needed to do the surgery. So one raining day in August of 2004 he was transported by ambulance to Children's Hospital Los Angeles(CHLA). His trach was put in successfully the second time and he was eventually and unfortunately transferred to their vent patient floor from the PICU at CHLA. I say unfortunately as things went to hell again very quickly.

The hospital sent him from the PICU which is one on one or two to one care to a floor with one nurse for several patients (who knows how many the nurse had). They never mentioned this move to us and it happened on a weekend I was out of town and my husband was graduating from school. Basically, NO VISITOR'S for this little guy who had had someone at his bedside 24/7 from the time he was born. I truly feel my baby Bubba felt alone and abandon and he gave up. Which led him to code on the vent floor within 24 hours of being transferred from the PICU.

Our world was falling apart again. Back to the PICU and test after test. It wasn't looking good. Connor's eyes were rolled up in his head he wasn't responding to light, he was swelled up from all the fluids that were pushed into him as well as steroids. Suddenly there where seizures that were not there before. The hospital staff was ignoring them and telling me they were tremors and he has always had those. Momma bear kicked in and neurology was there the next morning. They were screaming for medications STAT to stop his seizures within in seconds of walking up to his bedside. But I thought they were just tremors??!! I never wanted to hug a damn doctor as much as I wanted to that day.

All the tests are in and the doctor wants to set up a meeting with "the team" to go over Connor's prognosis. Crap! This can't be good, I mean we are not blind, stupid or delusional about the situation at hand.

So we get a diagnosis of brain atrophy and that they don't know if it was directly caused by the coding at CHLA or when he was sick in the NICU. In other words don't blame or sue us, it's not our fault. The conversation went to hell in a hand basket with me threatening to punch out the doctor to my right who would NOT SHUT THE FRACK UP. "The Teams" view was that Connor and I quote "was in a vegetative state, living in complete darkness. He would never be able to appreciate life, us, his sisters, etc" There suggestion is that we remove life support and keep him comfortable until he died. Or if we didn't feel comfortable with that they would just wait until an infection came and wouldn't treat him for it. They would medicate to keep him comfortable until the infection took him. The freakin doctor was on repeat with this, hence the threat to knock him out. Which he quickly shut up at that point and security was not needed.

Here we were with an 11 month old son and a really horrible prognosis from the doctors. He was almost a year and fought so hard. Do we let him go and pull his life support? Or do we give him a chance to live? Really no person should EVER have to ponder this for a loved one, let alone their child!

Jason and I saw how well the girls were doing and how they had changed since coming home from the hospital. So we decided Connor needed to come home and get out the hospital environment and we requested and immediate transfer back to the local hospital so we could work on getting him home.

After 15 months of living his life in a hospital Connor came home. I'm not going to lie, we had to jump through hoops and give up any privacy to make this happen. But it was worth it without a doubt. Connor came home with a home nurse since he could not be left alone and would die if he became disconnected from his vent or his trach came out for too long. Seriously, within in seconds of him being disconnected from his vent the boy would start turning blue.

We took him home thinking this was how life was going to be. Never knowing what his brain was capable of. Would his brain tell his body to breath on his own? Were his lungs strong enough? How long would he live? Did we make the right choice for Connor? Or are we making the right choice for us? Are we being fair to the girls with the attention and care Connor will need?

All of these were questions we were asking ourselves over and over.

My goodness the progress Boogie has made over these last several years. He steals every ones heart he comes into contact with. He loves to be touched, cuddled, loved. He doesn't like to be left alone and secluded. He loves when his sisters and cousins play with him. He just beams happiness and unconditional love. I don't care what mood you're in. You can't help but smile and be happy when your around him.

So you have read this far and your asking yourself okay so what's with this walk down memory lane?

This post is show that he is NOT in a vegetative state, he is NOT living in darkness and he is fully able to appreciate his family and the people in his life!

Not only that but as of today he is officially off his vent and no longer needs it. He can do the breathing on his own! His brain is doing what it is suppose to be doing and telling his body what to do. It seems unreal that we are here today. But oh it is so wonderful to rejoice in this major accomplishment!!!!!!

Thank you to all the nurses who have helped us over the years, we couldn't have done it without your help. And to everyone who ever sent out prayers, good thoughts for our family, THANK YOU!

The true test is still coming. Flu season will be upon us, but my mommy gut is telling me that we won't have a big issue with this. I think it is bye bye vent from here on out!

Wednesday, July 7, 2010

Family Walk + Fractured Arm = Mommy Guilt

Well Gwynne is in a cast as of today, and I have tons of guilt over it. Well with a lot of people having Monday off for the Holiday and no mail, UPS, Fed-Ex, etc work was slow yesterday. So I got to bail and head home at a decent time. Got home and thought it would be a great idea to walk the dogs and the family to all go. Best of intentions and family bonding at the core.

Both girls ask if they can take their scooters for the walk and being a good mom I told them they could, but they couldn't wear flip flops and had to put on shoes. Well that made Chloe opt out of the scooter situation and ask to walk one of the heathens that we call Vera & Oso. Lil Miss Gwynne pulled on her pink cowboy boots grabbed her scooter and the family was off for a nice evening walk.

Well Chloe tried to walk Vera, while I had Connor in his wheelchair and Jason was being dragged by Oso. Chloe wasn't able to control Vera and Vera basically was walking Chloe. So I took the leash from Chloe and pushed Connor's chair at the same time. We are about 5 houses from home and barely starting our walk.

I hear a crash and cries. Gwynne just ate it on her scooter in a neighbors drive way and she is not getting up. Just laying there crying. My stellar parenting skills kick in cause I'm irritated at this point(yes less then 5 minutes into the family walk). And I tell her she needs to get up I can't get to her while having her brother and the dog. She complains about her arm and I figure she jammed it she'll cry for awhile and be good. So we continue on with our walk.

The family togetherness gets better and better as we walk! Gwynne his holding her arm crying, Chloe is riding the scooter now with her damn flip flops on and Jason is feeling Gwynne is being a bit of a drama queen. Me! I just wanted everyone to SHUT UP! Yet also getting worried that there is something VERY WRONG with Gwynne's arm. UGH!

So we get home from our lovely family evening walk and I head off to the ER for an X-ray with Gwynne. Since getting to the ER all I have been playing over and over in my OCD brain is......

Why? Why did I have to get off of work at a decent time and think it would be a great idea for the whole family to go for walk? Had I worked my normal long overtime filled day none of this would have happened. Seriously! Had I just came home ate dinner put the kids to bed then walked the dogs none of this would have happened.

This has also brought about more worries about Gwynne and her eating habits. Would you expect a fall from a scooter to fracture an arm? This girl will not eat meat. I have to force her to eat just a bite or two. Now that being said. She will eat sausage, bacon, and chicken nuggets(sometimes). Why those items and nothing else? I'm concerned she is not getting enough protein and hence made it easier for this some what small fall to cause her arm to fracture. So do I feed her a ton of sausage and bacon to get the protein in her? She's skinny enough. LOL! I'm thinking she likes shakes and after dinner she needs to start having a protein shake for dessert. I need to figure out a shake that will be high in protein but still allow her to be hungry for regular meals.

I have thought about the garden burgers/meat. But at the same time I don't want to be making special meals for her. Is that horrible? But at this point for her well being I'm thinking I may have to.

Another issue may be calicum. The kids were on high calorie formula for a long time and then went to pedisure instead of milk. Have you ever tasted pedisure or ensure? That is like drinking a sugar laced milk shake. So they think milk taste gross and I have tried over and over to get them to drink regular milk. Thinking of trying Soy or Rice milk with them. Man I remember drinking like 2-3 big glasses of milk a day. Not these kids! When they eat cereal they eat it dry! What is going on this is not normal!!!!!????

This parenting gig really sucks sometimes. So for the next 4-6 weeks I will have a wonderful reminder of what a great mom I am. UGH!

But we will be off to the craft store to get some items to bedazzle the cast.

Sunday, April 18, 2010

5 Months Later

Wow! It has been a really long time. Work has been crazy and with a longer commute to and from I don't have much of a life any more. I should be cleaning my bathrooms right now. Instead I'm sitting her updating the blog.

We had a very nice Holiday and the kids of course made out like bandits. Grandma did reign it in a bit this year, I was really impressed at her restraint. LOL!

Since working so many hours at work and not really being home I took a few days off while the kids where on Spring Break. I took them to Knott's Berry Farm for the day and they had a blast. Boy! Was that a long day. Gwynne wanted to go on the big crazy rides that she wasn't tall enough for. Chloe wanted nothing to do with the scary lookin stuff. Wouldn't even go on the Log Ride. I might have to change my status on the girls. Gwynne may be taking over the extreme dare devil role from Chloe.

Connor has been doing awesome. He still amazes us every day. Jason took him to his pulmonary appt a couple weeks ago. FINALLY! Between us forgetting and the doctor cancelling it had been about 9 months since Connor had seen pulmonary.

Well the sleep study he did probably over a year ago went well. The doctor has started a plan to ween Connor off the vent during the night when he is sleeping. Currently, as long as he was awake he was off the vent with just O2. Now we start out for 2 hours every night while asleep he is off the vent. If he tolerates this then we bump it to 4 hours in a couple weeks. And so on. The doctors plan can have him off the vent as early as June/July.

This is VERY exciting, but scary as heck as well! I never really thought this day would come. But it looks like Connor may be able to get off the vent. We need to talk to the ENT about how to proceed on taking the trach out at the next appt. It's just crazy we are having these conversations.

Summer is fast approaching and we are looking into getting the girls back into some swim classes. Gwynne is doing another session of Cheer leading. She is still bugging for "the black team". Try out are next month for the team. But we are going to keep her in basic for now. Make sure she is going to stay interested, and to give us a bit of time before we have to shovel out the BIG $$$$ for the Elite cheer squad. We will be accepting donations via fundraisers. LOL!

Been thinking about getting some head shots for Gwynne to maybe do some modeling. I don't think I would be comfortable with the acting and things. The whole possible child star scares me. Gwynne does seem to love the camera. LOL!

Chloe really has so no interest in any extra activities lately. She is quickly becoming the gamer like her daddy. Jason and Chloe were in talks about taking a karate class, but nothing has come of it. This is a bit of our fault. Since moving we really have not checked out the City activities for kids like we did previously.

Here are a few pics from the last several months.

Sunday, November 29, 2009

My 4 Day Weekend

How low or non -life do I have when the highlight of my four day weekend was sleeping in until about 9:30am on Thursday & Saturday? Pitiful, just down right pitiful!

Thursday I ate more food in one day then I think I have eaten in a period of two or three days. UGH! But it tasted so dang good! Yet already craving the whole feast again. LOL! Spent lots of good times with family. Played a little pool with hubby and my uncle at my FIL's (Father in law). The kids decorated the Christmas tree Friday night after daddy got home from work. They are VERY excited about Christmas and don't feel we have enough ornaments on the tree.

Saturday we finally got out and got the kids their outfits for Christmas and paid a visit to Santa. The girls were way to cute. They had their list in hand and pictures they had drawn of themselves with Santa. Chloe decided last minute she didn't want to give up her picture to Santa.

Connor decided the noise the photographer was making was too much from him. So we only got one shot of all three with no crying. Poor Boogie! He was really upset and hard to calm down.

Gwynne wanted a picture in front of the Christmas tree just outside Santa's house, and my sis looked over to catch her striking a pose. Gwynne cracked me up as well a few minutes later. As we are walking down to another store there was a very tall attractive black women dressed very nice head to toe. I see Gwynne check her out and turn to check her out again. I'm almost positive she gave the women the up down check out that us women tend to do. I busted out laughing, I'm sure she took mental notes. Six people! She is freakin six!!!!

Well I have hit my wall and know now that 4 straight days of my children is TOO MUCH! I lost it a couple times today with them. UGH! The not listening, talking back, then the Diva who doesn't want to do anything unless cash is involved! Just makes a person want to freakin SCREAM! Yet at the same time I don't want to go back to work! Right back to those 12 hour days...Oh boy I can't wait!

Wednesday, November 25, 2009

Where the hell have you all been?!?!?!

I've been right here blogging away! I have no idea what your talking about. Well I will whine a little bit. Working very long hours at the J-O-B, and now that we have a BIGGER house I spend less time on line then ever before. Hence you don't get to have a dose of my wonderful sense of humor as much as before. LOL!

Well the not so Little's turned 6 this month. Was sitting on Gwynne's bed the other day talking to Chloe and I swear she grew over night!

We took the kids to Disneyland on their Birthday. We would be stupid not to really with the whole free on your B-day thing. We had a blast and spent the entire day. It was great to have an entire week day with the kids and not want to kill one or more of them. Now my mother, husband, or step dad on the other hand. KIDDING!!! Though grandma did get in a little trouble about 10 minutes into the park and the first ride.

Gwynne has been doing cheer leading one night a week and had a little performance. Now she wants to be on the All-Star team who does all those crazy flips and basket toss'. Little miss Diva was SUPER cute and rocked it. I was a bit surprised as she does the shy thing to the extreme so much. We asked Chloe if she wanted to do cheer with her sister. We got a resounding "NO", "I just want to watch the football" LOL! There has been talk of Chloe and daddy taking some karate lessons. Which the last time it was brought up Chloe proceeded to karate kick Jason in his shin. ROFLMBO!!!!!! Guess he should consider himself lucky it wasn't his nads!

As always I'm ill prepared for the Holidays. But what's new. Kids still don't have their Christmas outfits yet, no pictures done. I figure the week before Christmas we will be getting pictures and begging Maryann(CDI Portraits) for our Christmas cards to hand out to everyone on Christmas Eve and Christmas Day. LOL! Cause that's how I roll!!!! :P

I have four fun filled days off to spend with my family, or on the Internet when they start driving me bonkers. I'm not sure what I will do with myself having all that free time. Wonder if I can squeeze out one day of not getting out of bed?? Hey a girl can dream!

Oh and Gwynne has not dyed her hair or asked about it any more.

Happy Thanksgiving to everyone! Remember to enjoy your family now, they may not be there tomorrow.