One down, three to go...

Summer has been doing well. A couple weeks ago, they took her off the Lipids and it has been great with one less wire to trip over! Here she is modeling her attachments...

Before: With two IV pumps, the Enternal (feeding tube) pump, and oxygen tank we have quite a load to carry

After: One pump gone, sure lightens the load :)

As of last week she weighed in at 8 pounds, 14 ounces. Though she has been gaining weight each week, it is only about half as much as they would like to see her gain. She has been gaining about 10-11 grams a day...they want her to gain about 25-30...that's one ounce per day! We discussed maybe changing her food recipe and/or TPN. The nutritionist has changed the "recipe" for her TPN each week trying to get her to a place she needs to be. At this point, her lab work has been great, but she is lacking enough calories to gain. The new recipe has double the calories than the previous week and we have stayed at 27 ML's of breast milk per hour through her NG tube. We discussed the possibility of having to introduce formula to help with the digestion, but for now we are waiting to see what the increased IV calories will do for her...

The not so portable version of our baby....complete with her own R2D2 in the corner of her room

As far as lab work goes, Summer's bilirubin has gone down to 6! It was as high as 12 a few weeks ago, went to 9.6, 8, 7.7, now 6. She is looking a little less yellow, but still not pink enough to match her room :) I think I might ask Santa for a pink baby :) Ok, no replacement, just make the one we have pink :) We have to be careful what we ask for!!

This Tues. is our regular clinic visit day...in addition to the GI clinic, we are meeting with the Ocupational therapist and having a swallow study done. I have been giving Summer a bottle with her 1/2 of an ounce 4 times a day instead of a binky trainer. I have also nursed her a few times. It is nice to have a somewhat "real" baby :)

Little Tom likes to help keep Summer happy...an ingenious way to keep the binky in. My hubby says he would have used duct tape, ha ha!

She is still sweet as ever....and crying right now, gotta go :)

Those crazy Cameron kids

Just for fun, I thought I would show off our cute kiddos :)

Thomas Kaiser

Named after his Dad and Grandpa...his middle name from my Grandpa Theodore Kaiser

Tom says he's Pinnoccio...Tom is 10 and is in 4th grade. He loves to draw comic books, read, and play video games. Tom is very empathetic and kind. He has lots of friends and always looks out for them and his siblings. He and Morgan love to play together and he gives her piggy back rides all the time. Tom named Summer and loves to hold her. He is a great brother to Andrew too...he helps him with reading and Andrew really looks up to him.
Tom in his classroom with his invention "Keepin' track"...a shoe box turned into a CD and game organizer

Tom at his 10th birthday party

Tom loves visiting butterflies and getting them to land on him

Tom has fun doing yard work...Grandpa and the kids hleped clean up the huge pile of leaves in our front yard

Tom, Andrew, and Connor in a Fox den at the zoo...we always have to stop her every time we go...even though they don't fit in there as well as they used to

Andrew Sheldon

Named by me :) and his middle name from Tom's favorite Grandpa, Charles Sheldon

Andrew is in 1st grade, 6 years old, and just got glasses! He was so excited to order them, he asked me every day when they would arrive. He is thrilled to be able to see! Andrew has a very unique look on life...he listens intently and learns quickly. He started school last year and went from knowing 4 letters of the alphabet to reading by the end of the year! Andrew is very sweet and is great with his siblings. He tries really hard to do the right thing and is a caring friend.

Andrew with a butterfly

Andrew can be quite a goof ball....atop this giant catterpillar at the Pacific Science Center

Andrew is as long as this dino foot print at the Science Center

Andrew is very cute with his little sister

Morgan Valerie

Named by me and Tom...we have both loved the name for a long tme, just had to wait for a daughter :) Her middle name is after Tom's Grandma Val Sheldon...Valerie is a name my mom has always loved too, none of us fit the name, but Morgan does :)

Morgan is 3 and full of it! She is so cute...she has just blossomed from a toddler to a little girl in the last few months. She has a funny sense of humor, loves animals, Diego, and Dora, My Little Ponies, and horses. She does not love wearing dresses. In fact, we have to wrangle her into a dress Saturday night so she will be dressed for church the next day!

Morgan love baby Supbo...one of the first nights Summer was home, she was crying on the floor with Morgan next to her. I went into the kitchen for a minute and Summer stopped crying. I went to check on her to find Morgan happily munching on curly fries (I told her they were like snakes) next to her. She babbled something about "Supbo eat nakes". Summer had her first real food! She was happily sucking on a curly fry and loving it! I wish I would have grabbed my camera, but surprisingly enough, I didn't....something about getting the salty fried thing out of Summer's mouth :)

Morgan is a character....she loves purses and hooded coats

Morgan loves hammin' it up!

Morgan had a blast playing in the kids' area at the Pacific Scienc Center

Summer Marie

Named by her brother, Tom...her middle name in honor of my Grandma, Bertha Marie Norris

Summer is now 4 months old and just under 9 pounds. She is doing well at home and we love having her. She smiles a lot at us and tries to make little cooing noises. She's so sweet!

Summer has recently discovered her tongue...she sticks it out all the time!

How cute she is in this dress made by my sis in law...the frog blamkie too :)

Suumer modeling her new dress...Shameless promo for my sis in law's business @ chriscrosscrafts.com :)

A quick update on our favorite preemie :)

Summer is 8 lbs. 8 ounces, 21 inches long

Life has been nuts lately. I finally have some computer time and thus I am posting all kinds of stuff today :) I suppose you are all curious about how Summer is doing...

She is doing great! As you can see in her recent pictures, she has been quite jaundice. This is because of the constant use of TPN and Lipids. She needs these while we slowly increase her breastmilk intake to the point of weaning her completely off the IV TPN. When Summer was first diagnosed with NEC and had surgery to remove all but 10% of her intestines, we were told she would have to be on IV TPN for the rest of her life. She would more than likely develop serious liver damage and eventuall lose her life early from liver failure. Well, with lots of prayers and a little body with incredible healing power, she is proving them wrong!

At 4 months old on the 14th, Summer weighs 8 pounds, 8 ounces (6 pounds bigger than at birth!) and is getting about 3/4 of her nutrional needs from breastmilk in her feeding tube! Each week we visit the GI clinic, they are happy with her bloodwork and increase the milk per hour. This week she goes up to 25 MLs an hour...her goal to be off TPN is only 30 per hour!! Each time the milk is increased, the TPN is weaned down...getting closer to exclusively taking breastmilk. This week we are getting rid of the Lipids (she has had a pump for TPN (the vitamins and minerals) and a pump for the Lipids (omega 6 fats) This is sooo great for her! The Lipids are believed to be a major part of the liver damage problem and would have been replaced with Omegaven, if it were available to her. However, now that she is getting so close to not needing IV nutrition, she won't need Omegaven at all! It may take a few more months with small amounts of TPN while we fatten her up a little more, but the future is definitely looking bright for her! :) With the new change this week, we also get to have a 4 hour break without anything running....next week we will get 8 hours and so on.... Her Bilirubin had gotten as high as 12 a couple of weeks ago, then down to 9.6, and was only 8 yesterday. Her jaundice is getting better as a result and she is looking closer to pink than yellow...we like pink :) Wow, we are being blessed!

In addition to all that good news, last week Summer had another CT scan. A month and a half ago she had a scan that showed some fluid where brain should be. The neurologists were concerned with this and so were we. The current scan shows she still has some swelling in some ventricles, but the areas of fluid are filling in and everying looks like it is improving! You can't imagine what a relief this is for us....ok, maybe you can :) We will still have to watch her, but things are turning more positive than we thought they could. Summer is starting to really respond to us. She smiles a lot and is starting to make cooing sounds...it is really cute.

Here are some proper "newborn" pictures (only 4 months late, ha ha) I took after she yanked out her feeding tube again. They remind me of the pictures the photographers that come to the hospital get. The lips are always pursed and they grimace when you take away the binky...I have to snag every opportunity to see her cute little face without tubes I can! She tends to cry alot when I do.....you'd think she would have learned by now how many pics I take!

Notice the nasal cannula halo on our little angel, ha ha :)

Birthday Celebrations

Tom's 10th birthday was Oct. 24th...as you know, Summer came home on the 23rd...needless to say, life has been a bit busy since then! We knew Summer was coming soon, so the Sat. before she actually did, we took Tom to the Pacific Science Center with 3 of his friends, Andrew and Morgan of course. They had a great time there after we ate Pizza. After we closed down the place, we went to McDonald's for dinner...mmmm....well, it was actually very fun for the boys :)

Jacob, Tyler, Tom, Cody, and Andrew pose for the shadow wall...a bright light flashes (no, not from my camera) and their shadows are frozen on the wall...they had loads of fun in there

Andrew in the big chair

A big game of chess with Jacob and Tyler

Cody and Tom at the big kids table

Cody and Tom played hazard cone checkers

Morgan and I hung out in the little kid's area and she had a ball! She had fun wrestling with this "baby hump whale"...she gets her animal names from Go Diego, Go!...all whales are designated humpback, well rather, hump whales...she is funny :)

Morgan is hammin' it up for mom!

Cuteness is dangerous!

The boys played with this contraption for probably 45 minutes!

Cody, Tyler, Tom, and Jacob

Morgan rode the giant catepillar

Andrew was "bugging" his brother and friends with this giant bug puzzle

Tom loves the butterfly house and stayed in there until one landed on him

Some cool butterfly shots

Tom, Andrew, Morgan and Jacob and a butterfly

Morgan loves the "dinosauts"

Oh no! Jacob is feeding Tom to the giant scorpion!!


Happy Birthday Morgan and Tom!

We have such a large family, we combine birthday gatherings...Tom turned 10 on Oct. 24th and Morgan turned 3 on Nov. 4th

This year's birthday cake was a chocolate fountain...no candles, no ice cream, no baking! The kids loved it...we might have to repeat this :)

*WARNING! Tone deafness runs in the family!

Morgan loved her Dora castle and furniture she got

Aunties, Debbie and Rachel played too

Morgan opened her gifts very carefully and had a great time

Tom got a bunch of DS games...he was in heaven!

After about an hour, Morgan tore herself away from the Dora toys and finally dug into the chocolate fountain....literally

...good thing we were all done, yuck! She takes the term double dipping to a whole new level!

Chris, Morgan, and Ryan

Brianna, Connor, and Tom

Birthday boy!

Summer got all dressed up...first time in a dress, cute, eh? Today was also a welcome home Summer party...most of the kids met her for the first time that night

Ryan going in for a kiss.....

...plants one on Summer

Grandma Norris and Summer

Brianna is the oldest on my in-laws' side of the family...she loves the little kids...we love her! Hi Brianna! :) I am very tempted to rent her for a couple of weeks to help me at home!
Who could resist this face????
Jared is getting big :)