Seasons Greetings

To say we were busy this Christmas Season is an understatement. With Bella's cleft palate repair surgery on Monday the 22nd, which required one night stay in the hospital, and then a 3 week recovery period...which we are still in, it just didn't seem much like Christmas around here. We did manage to get our Christmas cards out a couple of days ago, so I guess you could say they are more of a New Year's card. We had high hopes of including a letter to talk about all our activities this past year, but we just didn't find the time. So instead we will write our "year in review" here on Bella's website. Followed by her post on the surgery.

January: The month where big goals get set (and hardly ever get met). Let's see, back in January we had a bunch of lofty goals for the year. Finish the landscaping, add a patio, and possibly add a screened in porch. Inside we wanted to finish the bathroom downstairs, update the kitchen counter tops, and possibly add a more efficient fireplace insert. You'll see how many of these goals were accomplished. But then how does anyone get much done with these three always wanting attention!


February: Bella turned 5 months old, we decided that we needed to start her on baby food, being that she needed to master the food and drinking from a cup by the time she had her cleft palate surgery which was scheduled in the end of September. Kristen's work became very hectic this month, as some major restructuring went on. This caused a lot of overtime for her.

March: Easter came and as it seemed to go with all holidays, Bella got a cold. So we dressed her up at home and took some photos, just so she could wear the dress mom bought for her. She seemed to take a liking to the fake Easter grass. Jesse and Kristen were busy studying this month for their structural professional licensing exam, which seemed to take all their time.

April: Jesse and Kristen took their exam, which finally freed up some time to get things done around the house....remember that long list of to-dos!

May: Bella started going to day care full time, as Jesse and Kristen went back to 40 hour/5 day work weeks. It started to get nice outside, so we decided to landscape the front yard....that counts as half of one item off our to-do list.

June: Jesse and Kristen treated themselves to a vacation in the Riveria Maya, Mexico with their good friends Dave and Holly from Phoenix. It was a nice break to get away and enjoy the sun and fun.

July: Here comes another holiday..the 4th of July. We had plans to go up to the Sneller family cabin near North Platte, NE. But again Bella got sick, and this time so did Kristen, so we stayed home and enjoyed the fireworks from our new Patio furniture on our deck.

August: We spent most of this month preparing for September, we also decided to postpone Bella's surgery until December, which would give us more time to get her transitioned to the cup and off a bottle. Bella also had ear tubes put in, to help relieve the fluid and allow her to hear better.

September: We kicked off the month returning to Plattsmouth for Kristen's 10 year high school reunion.

We then celebrated Bella's birthday, it was hard to believe she turned one already. We had a whole turtle theme and lots of friends and family over. For pictures go to: http://thelifeofbellaemerson.blogspot.com/2008/09/its-my-party.html

A couple of weeks later we went to Hawaii for our first family vacation. I can't believe we survived the plane ride...but we did. For pictures go to: http://thelifeofbellaemerson.blogspot.com/2008/10/our-first-family-vacation-hawaii.html

Now we know we can take Bella along with us, although we may not attempt such a long trip for quite awhile.


October: We headed up to Lincoln Nebraska for the Missouri football game and a chance to catch up with old college friends. It was a great time (although not a great game).

November: This whole month was pretty much in preparation for Bella's surgery. We did manage to make it back to Nebraska and see family for Thanksgiving, as we knew we wouldn't be traveling for Christmas.


December: Bella's big surgery. See surgery post for all the information. Oh and about all those to-do's. Well we never really got any of them done, so I guess they will go on next years list again.

We can hardly believe another year is over. We can only hope that next year is bigger and better for Bella. Please keep checking this website, as we try to update monthly on all of Bella's happenings. So goodbye for now....from Bella (a.k.a. crazy hair).

Bella's Cleft Palate Surgery

Well I'm not going to sugar coat this experience....it was awful. There is no other feeling like putting your child through something you know is incredibly painful and having them look up to you with big eyes wondering what they did to deserve this, having no way to explain to them why.

The surgery was scheduled for Monday Dec. 22nd. We were to arrive at 9:30 that morning downtown at Children's Mercy. Her surgery was to begin around 11am that morning.

Bella prior to surgery

As we waited around prior to her being taken away for surgery we heard another child screaming as he/she left their parents. It makes you glad that your child doesn't have a clue what is happening and luckily will go with strangers, although it makes it harder on you later.

Bella left for surgery right around 11am, and we headed off to wait in the waiting room. Almost an hour went by before we got the call that they had started surgery. Another hour went by and they called to let us know everything was going well and the doctor would be coming by to see us in a half hour. Dr. Singhal did come to see us and let us know that the surgery went wonderful, Bella was heading off to the recovery room and in an hour to hour and a half we would be able to see her. It was probably an hour and a half later and nurses from the recovery room called us to let us know that Bella was not coming off anesthesia well, she was having troubles breathing, and they needed to put in a breathing tube. A half hour later we called back up there to see what was happening, and they said that they normally didn't allow parents into the recovery room, but since it was taking so long, we could come up and take a peek.

It was quite a sight to see her. Her mouth and nose had dried blood coming out. She was sleeping as the pain medication had set in. They claimed we were having to be transferred to a different room than originally thought, so it was taking awhile to get the room set up. But they would call us back up as soon as the room was ready. So back down to the waiting room we went. Another 30 minutes went by and we were finally called back up to head with Bella off to her room.

Bella with her breathing "nose trumpet"

By this point Bella was crying off and on as we changed rooms, she originally had an oxygen mask on, but we took that off and held the oxygen up to her face, so that it was more comfortable. Jesse and I spent the next 15 hours trading off holding her and she went between sleeping and being awake and in pain. I think the two of us each got about 3 hours of sleep that night. Our main goal was to get her to eat, which is pretty much impossible when the surgery was on the mouth. They told us that the better pain medication could only be taken orally, and that was only once she ate. The pain medication she was currently on, only lasted 45 minutes long, and could be given every 2 hours. Which meant most of the time was in pain. Some time in the early morning hours we convinced the nurse to take out the nose trumpet. Figuring it was probably hard to do any swallowing, with something foreign in her throat. Let alone a newly constructed mouth.

The nose trumpet finally comes out and we attempt eating with a syringe.

We maybe got 4 ounces in her the whole time we were in the hospital, but luckily the next morning they told us that was enough to start her on the oral medication, and to let us leave around noon. So we packed off and headed home, this was Tuesday the 23rd.

Bella showing off her arm braces

With little sleep we prepared to take turns feeding her and holding her. Jesse ran off to fill the prescriptions, while I attempted to feed her again. That day went alright, we could tell she was in pain but the meds seemed to do their job. Our only big problem was she really wasn't that interested in eating, she maybe only took a couple more ounces once we got home. We were told to keep her upright to sleep, so a car seat worked well, and to also run a humidifier as the most air would help the healing.

Bella receiving her humidified air treatments

That evening Jesse and I took turns again, I stayed downstairs with her until 4am, and then headed off to bed, as Jesse took his turn. The next day, Wednesday Dec. 24th, was much the same, except Bella flat our refused to eat. She hated taking the medicine, and we believed that eating from the syringe was too similar to taking medicine, and she would have nothing to do with it. Because she kept taking medicine on an empty stomach, she was getting upset. And to add to that, whenever she had her arms free, she would violently tug at her ear. So we figured she must have the added benefit of getting an ear infection, so we started her on drops for that.

Hanging out Christmas Eve

Christmas Eve night, we again split shifts. Bella was more restless than the night before, with all her added ailments, and little sleep was to be had by all of us. Jesse noticed that she was having difficulty breathing. And in fact it seemed like she was having bouts of sleep apnea, and constantly waking herself up. That next morning we noticed that some of the gel filler that had been in her mouth, was now missing, and a new hole had formed. Frightened we tried all of the nurses lines to the hospital we could, to talk with a doctor. We figured we would be heading back to the hospital. What a Christmas day for us!! We finally did get in touch with an on call doctor, who told us the missing gel was not that worrisome and it could wait for our follow up with the doctor the next week. We were still concerned about the breathing, but I realized the narcotic pain medication she was taking, claimed it could cause breathing problems. And since she was taking so much of it, I figured that might be causing it. And decided to space out the doses more, add Tylenol in between. We also attempted feeding by cup as an alternative to the syringe. It was a messy process, but we did get Bella to eat.

Bella eating/drinking by cup

As we spaced out the medicine the breathing got better. On Friday, December 26th, the day was going much the same, except again Bella flat our refused to eat anything. And her poor tummy was so upset that she was having horrible diarrhea from all the medicine on an empty tummy. So we spent most of the day attempting to feed her, and getting no response. It took all the way until Saturday morning at 4:00 am until she would eat. I mixed a little bit of baby food carrots into her formula and lucky for me she started eating. After 30 minutes into our feeding, we had a huge storm come through and the light went off. So I had to finish feeding by candle light. Jesse got up and we saw some of our neighbors outside, as there were shingles all over the yard. Since we couldn't do anything about it and it was so early we all decided to head back to bed and try and get some sleep. Oh and on this night Bella was actually doing a good job sleeping, she was in our bed beside me, while Jesse camped out in the guest bedroom.

Bella eating by candle light

So it's now Saturday and we have Bella eating, and her pain is getting better, but we have no power. Luckily we had warm water, so we were able to give her fresh warm formula. But as the morning wore on, it got colder and colder inside our house. Jesse and the neighbor had to go buy a back up generator for our sump pump, as it had been raining all early morning/morning and we didn't want to flood our basement. Finally as we were debating leaving our house and heading over to Jesse's sisters, the power came back on, which was 1:30 in the afternoon.

Bella trying to stay warm as she naps, while the heater isn't working

And after that point we had hit the magical 4 day mark, and Bella started feeling better. It's now been a whole week, and we finally got some smiles and laughs our of her. We are also getting her to eat more, granted she is still extremely messy, but we will take it.

Thanks to everyone for the warm wishes and prayers, we certainly needed it to get through this difficult time. But I think I can say we made it through to the better side and we have our return appointment with the doctor tomorrow morning, so hopefully he sees that everything is healing well. And now we just need to somehow get caught back up on our sleep!!

Good Luck Uncle Jer

We love you and we wish you well as you head off to Afghanistan!! May you have save travels and more importantly stay safe while you are serving our country. We will see you in a year.

O' Christmas Tree

Bella loves the Christmas tree and all the lights. These are her little trees that she can get up close to and check out.

We are now officially in our self imposed home incarceration. Bella's cleft palate repair surgery is only 2 weeks away, and we can't risk her getting sick and having the surgery cancelled. So we will be holed up at home, and hopefully not coming into any contact with sick people. It will be a real test for Jesse and I at work, to not catch anything and bring it home.

Colby and Elle hanging out in the basement on their blanket. I got a kick out of how they framed the lab on the blanket.

Happy Holidays 2008

It's getting cold outside

We wanted to wish everyone a happy thanksgiving!! We traveled to Nebraska to see family, and then visited with more family here in KC. We were hoping to travel down to the city market and crown center to take part in the Christmas festivities, but it started raining and sleeting outside. So we will hope that one of the next weekends is better and we can get down there.

Sunday Workout

Since Jesse and I are not hosting a Thanksgiving meal this year, we thought today sounded like a good day to make our own meal, prior to the holiday. So that means lots of kitchen time for myself. I decided to make turkey, sour cream and scallion mashed red potatoes, green beans, rolls, and a pumpkin cheesecake. And yes all of this food is just for us (and my mother who will be joining us for Sunday dinner as she is back to watch Bella for another week). So while I was slaving away in the kitchen, Bella was watching me in her jumper. Normally she just sits in there and will chew on her hands. Occasionally she will play with the toys. And very rarely we get to actually see her use her legs and propel herself upward. So here is Bella caught in action actually using her legs!!

Did you think I meant jumping and having them actually leave the ground.....no not Bella, we are just happy if she bears some weight on them!!

Inspiration

I have been meaning to post this poem for quite some time. It pretty much makes me tear up every time I read it. Enjoy


How Mothers of Handicapped Children are Chosen

Erma Bombeck, 1980

This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over Earth. As he observes, he instructs his angels to make notes."Armstrong, Beth; son; patron saint, Matthew. Forrest, Marjorie; daughter; patron saint, Cecilia. Finally he passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one, God? She's so happy.""Exactly," smiles God. "Could I give a handicapped child a mother who does not know laughter?""But has she patience?" asks the angel."I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it. I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make it live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you."God smiles, "No matter. I can fix that. This one is perfect.She has just enough selfishness."The angel gasps, "Selfishness?God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, there is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word. She will never consider a 'step' ordinary. When her child says 'Mama' for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations. I will permit her to see clearly the things I see - ignorance, cruelty, prejudice - and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life."

"And what about her patron saint?" asks the angel.God smiles. "A mirror will suffice."

Happy Halloween from 'Stinkerhead'. That's right we were a skunk. And luck would have it that we are also getting our first tooth (finally)!! So we weren't having the greatest of days. But we did manage to finally get her in the costume and go out around our cul-de-sac.

I think it's time for bed!!

Halloween Eve

Not to be confused with 'Old Hallows Eve' which is tomorrow. I finally finished my Halloween sugar cookies tonight, it only took me two weeks to decorate all of them. Mostly finding time was my biggest problem. Here is a picture of Bella in her under costume....I think it looks like a cute burglar. Now I'm sure you can't wait to see what her actual costume is....stay tuned for this weekend. Or if you live close you might actually get to see the real thing!!

And here is the picture taken after we picked up our pumpkins. Hopefully we can get another shot this weekend with the nice weather, and one where we can actually see her face.

Have a Happy Halloween everyone!!

No pictures of fall

It's fall and I love fall. I was excited to do a bunch of activities - visit a pumpkin patch, go trick-or-treating, make apple pie. Well I guess this year with Jesse's busy schedule, and Bella's not able to do much yet, I will have to give up my dreams for a perfect fall.
We went to a church near our house that sold pumpkins for charity, we picked out a couple, and I had wanted to take a family picture of us. Well that didn't work out, Jesse will have to admit that he was a little bit crabby. I do have some cute ones of Bella (granted she wouldn't lift her head up), I will post them as soon as we get our internet turned back on at home.
We will also get to bring Bella to my work for trick-or-treating and maybe drive around to a couple of friends so that we can show off her costume. But I still really wish I was taking around my toddler that could walk. I don't know what it is about certain activities, but most days go by and although we think about the things she can't do, we don't let it bother us. Other days I get really sad, like how she still can't sit or even hold her head up for pictures. So really this halloween won't look any different than last halloween, except she will be a little bigger and wearing a different costume.
But I guess I can still make that apple pie!

Our First Family Vacation - Hawaii

Bella's first vacation, airplane ride, etc. And boy was this trip a long one. Jesse was really dreading the travelling, and I was a little worried, but Bella did wonderful. That's not to say we weren't up in the back of the plane walking around with her, during hour 12 of a 14 hour travel day. But that was pretty minor in comparison to what could have happened. Plus magically, Bella was able to make the 5 hour time difference adjustment like a champ, which made the vacation that much better.
These next two pictures you could almost call child abuse, with the amount of sand we had to clean off Bella after they were taken. But they still crack us up every time we look at them. Jesse made the turtle sand creature for Bella, and below I wanted a picture of Bella on the beach that would let everyone know where we were.

This is Bella on North Shore. We joked she was our little travelling gnome as we took her everywhere with us and would plop her down for a photo op!!

And the funniest moment of the whole trip has to be on our trip back to the beach house after our afternoon at North Shore. My parents accompanied us, we were actually in Hawaii for my aunt's wedding, so my dad's family was all there and that is how we were able to stay in such a great location, for a decent price.

But back to the funny story. We stopped at a grocery store on our way back to the house to pick up some essentials (to give an idea of prices a 12 pack of pop was going for $8) and my dad stayed in the car with Bella who was beginning to get a little fussy. Well as Jesse, my mom, and I got back to the vehicle my dad was walking away saying he needed to wash he hands. Low and behold Bella had a poopy diaper, and my dad, who hasn't changed a diaper since my little sister was a baby (now 23) decided he would see how wet the diaper was and stuck his finger into it. He was unpleasantly surprised when it came out warm and stinky!! Needless to say he managed to change her diaper without knowing where the wipes were and did the best job he could. Way to go for changing the diaper.....and we will NEVER forget the look on your face as you made a hasty exit to wash up!!

Here is Bella (along with us) at Pearl Harbor. This was the only big disappointment of the trip, as Bella was ready for a nap and decided she would not be quiet and make it on the boat trip to the actual monument. Luckily my dad had seen it before, so he took Bella out to the vehicle so she could lay down. Thanks dad for doing that!!

Jesse and I enjoyed one morning together doing hikes. We tackled Diamond Head first, which was a challenge, but honestly didn't have the greatest views. Then we did Manoa Falls, pictured above. It was the best hike we did, going up the mountain in the rain forest to a small waterfall, with great scenery all around.

Here is Bella during the wedding ceremony, she was definitely ready for bed and actually quite fussy. Luckily she was able to fall asleep in her car seat and sat in her stroller throughout the whole reception.

We took a day to visit a couple different beaches, this is how Bella enjoyed it all, from her little tent that did it's best to block the sun and sand from her.

Our last full day in Hawaii we went to the Polynesian Cultural Center for a Luau and evening show with my parents. It was quite a beautiful place and I must admit it was probably the best pulled pork I have ever eaten.

And finally a quick picture from the balcony of the beach house, just to give you an idea exactly just how close to the water we were. It was a great experience and I don't think we could have planned a better vacation............but we will certainly try.....for next year!!

Hectic Days

Ahhhh....to be back on the beach in Hawaii.

I am long overdue to post our Hawaii pictures....I will try and get to it soon. Problem is, those pictures are mostly uploaded at home, and I don't ever seem to have time.

A lot has happened since we got back from vacation. First my job has been crazy busy, and I can't ever seem to get enough time there to finish everything. Secondly, Jesse is busy studying for his test, which is basically making me a single mother for the next month. And lastly...the biggest change....we pulled Bella out of daycare.

First I want to say that I don't think Bella was in any harm during her stay at daycare, but Jesse and I just starting questioning a bunch of things that were happening. And I think we are learning even more as time goes on. We have suspecions that Bella was left in her carseat or a swing for the majority of the day. We also think she wasn't getting as much to eat as was told to us. Plus little things that I had requested (as in let her lay around on the floor and play with toys) weren't being done. I don't know any of this for sure, but like I said, we have our suspecions.

So my mother has graciously agreed to come down from Nebraska each week and watch Bella (we are paying her). And actually Jesse's mom is helping out this week, so my mom can get everything in order at home before she is down here all the time. In just the past couple of weeks we spent with Bella in Hawaii, or she has spent with her grandmothers we are noticing improvements. In both her weight gain/eating amount and in her trying to hold her head up more, and rolling around more. I don't think we are going to find any immediate success in her development, but even seeing these little changes are encouraging.

One Year Update

It's been one year, and while Bella has been slow to grow and develop, there are a few things that she has accomplished.

Weight

at birth -

5 lbs 0 oz

Weight at 1 year - 15lbs 8 oz

Height at birth - 18 inches

Height at 1 year - 26.5 inches

We are still struggling to get Bella to hold her head up, she tends to prefer to just let her chin rest on her body and look around. She will roll from side to side, while on the floor. And occasionally she has rolled from her stomach to her back, and from her back to her stomach. She still does not like to push up with her arms, and also doesn't like to take any weight onto her legs (i.e. standing). She also doesn't do well sitting, although I think that has more to do with her not holding her head up. Meaning her head starts leaning, and the whole body just goes with it. Although she has gained more of a personality. She definitely has a social smile, and has a very adorable deep laugh.

A couple weeks ago we were fitted for a kidkart, basically a fancy stroller that acts like a wheelchair. It will better position her for feeding, and playing. We are still waiting for approval from the insurance company to see if we will get one. Now we are just basically waiting for her cleft palate surgery that will happen in December. I have a feeling that no matter what skills she learns between now and then, we will be starting all over once she starts recovering from the surgery. We also were a little frustrated with our pediatrician during her 1 year checkup. Our pediatrician is still worried about her weight gain, and wants us to look into using a feeding tube. Personally I think that's ridiculous since she eats fine. And plus there are children similar to Bella who at 2 years only weigh 16 lbs, so since she is already there at 1 year, I think she is doing great. I think transitioning to foods will be a whole other story, but we don't plan on tackling that feat until after the surgery. And besides, at 1 year we still have no teeth.

It's my party

I decided on a theme for her first birthday party....turtles. We figured Bella is slow in her development and growth, so she's like a turtle. I was inspired by different things on the internet and attempted to create designer suger cookies, turtle cupcake toppers, a cupcake stand, and of course put everything together. Needless to say it took a lot of work, but I think it turned out great.

We had a really good turn out for the party, I think about 24 adults and children were able to come. Here we tried to get all the kids in for a picture. The Nebraska football game was also going on, which we had to order.

Bella was able to sample the frosting......I think she might like it!!