The Legend of the Short Gut Wonder!

Summer's BIG day!

2011-09-01T09:38:00.000-07:00

Here we are...Aug. 31, 2011, first day of school!

Summer turned 3 on July 14! Wow! Time has flown by so fast. She has come so far! She has been enrolled in a birth to 3 program up until her birthday and now qualified to go to Preschool. She is getting so smart...communicates VERY well, and is getting more and more determined every day to push herself physically. She now loves to hold our fingers and "walk", using one foot at a time. This a HUGE "step" for her! :) Hillcrest is an early childhood learning center with classes that are integrated with 10 special needs kids and 5 typically developing kids. Summer goes to school in her new wheelchair (that looks like a stroller) and needs lots of help getting around. She is lucky enough to have her own personal aid all day :) So, this makes me feel better...knowing there is a "me" with her :) His name is Rob and we love him already! He is so great with Summer...she seemed to enjoy him too :)

Teacher Kathy putting Summer's name tag on while we waited for school to start....

Such a big girl! Yet, still so small....she loved the Summer size chairs and table :)

Summer with Rob.

The 2nd day of schoo (today), we put Summer on the bus....

She was okay until the driver started raising the ramp to put her on and said, "wave bye, bye, to mommy and daddy". Her face instantly crunched up and she started crying...I did too. I thought the first day would be harder, but sending my little girl on a bus while she was sad, was NOT my idea of a good time :( The driver was really nice...she let us get her a doll to take and said kids are usually fine once the bus gets going. I am picking her up today....we'll see how it went! We are so excited to have reached this milestone with her...she is doing BIG things :)

A video worth sharing

2011-05-06T16:38:00.000-07:00

When I first found out we were expecting twins with complications, I was directed to a the Fetal Hope Foundation...an organization that helps families who experience Fetal syndromes like Twin to Twin Transfusion syndrome. From there, I found many Youtube videos and blogs detailing others' experiences. These were both helpful, theraputic, and at times, heartwarming. Though our story has not turned out to be one that lacks sadness or tragedy, I still feel it is worth sharing. It is our story....the story of how we were blessed with two beautiful little daughters. We continue to see little miracles with Summer and are thankful for her everyday! Yes, even when it is hard...she has made our family better for it :)

Here's my video...
www.youtube.com/watch?v=ZQPb3CY_wSM

The diagnosis

2011-04-10T15:31:00.000-07:00

It's official...Summer has Cerebral Palsy.

The last few months I have been discussing Summer's condition in depth with her therapists and doc at Children's. The GI doc who has been taking care of her since she was 3 months old has been telling me for a long time that she has CP. He has explained his view point on this and always refers to things she can't do as a result of her CP. There has been no official diagnosis up to this point from the Neurodevelopmental clinic, so I have not referred to her having CP. Summer's OT has told me several times that she feels Summer is developmentally delayed, but doesn't necessarily show the attributes of a typical CP kid. According to her brain scans (she has significant scarring in the center area called the corpus collosum), there is physical evidence of a brain injury, that occurred when she got NEC (necrotizing enterocolitus) at two weeks old. NEC is such a severe shock to the system, that brain injury is a quite common side affect...her GI doc has seen many cases like hers. CP, by definition: An abnormality of motor function (the ability to move and control movements) that is acquired at an early age, usually less than a year of age, and is due to a brain lesion that is non-progressive.

I have struggled with this for a long time and in fact, I have avoided going to the Neurodevelopmental clinic because I didn't like the negative feeling I received from them after a scan she had last year. Though predictions can be helpful at times, Summer has always exceeded them. I have worried less about her progress while keeping myself in the dark, so to say. I decided it was time to suck it up and go back to see them.

Summer had an appt. last Wednesday and I was pleasantly surprised. Though the result was the one I was hoping to avoid, it is not as bad as I thought it was going to be. The nurse practitioner was very thrilled with Summer's progress! Of course, not going to her for almost a year gave us lots of time to show a lot of huge changes, ha ha! She kept referring to Summer as being "smart" and telling me that if you have a "smart" kid, they can do more than expected. They might not do things the way we would, but they get them done. She has seen several kids with a bleak diagnosis, far exceed expectations. Though it is common to identify someone with CP as having cognitive issues as well, CP only refers to the motor function and not the intellect...in many cases the brain injury has also affected the intellect. Fortunately, Summer has developed so well cognitively...this will be a huge advantage to her.

CP is classified in 5 stages...5 being the most severe. Summer is showing development in stage 3 and some things in stage 2. I agreed to have the nurse practitioner evaluate Summer's progress... According to the "Gross motor function classification system for cerebral palsy", here are some things we may be seeing in the future:

Between 2nd and 4th Birthdays

Level II Children floor sit but may have difficulty with balance when both hands are free to manipulate objects. Movements in and out of sitting are performed without adult assistance. Children pull to stand on a stable surface. Children crawl on hands and knees with a reciprocal pattern, cruise holding onto furniture and walk using an assistive mobility device as preferred methods of mobility.

Level III Children maintain floor sitting often by "W-sitting" (sitting between flexed and internally rotated hips and knees) and may require adult assistance to assume sitting. Children creep on their stomach or crawl on hands and knees (often without reciprocal leg movements) as their primary methods of self mobility. Children may pull to stand on a stable surface and cruise short distances. Children may walk short distances indoors using an assistive mobility device and adult assistance for steering and turning.

Between 4th and 6th Birthdays

Level II Children sit in a chair with both hands free to manipulate objects. Children move from the floor to standing and from chair sitting to standing but often require a stable surface to push or pull up on with their arms. Children walk without the need for any assistive mobility device indoors and for short distances on level surfaces outdoors. Children climb stairs holding onto a railing but are unable to run or jump.

Level III Children sit on a regular chair but may require pelvic or trunk support to maximize hand function. Children move in and out of chair sitting using a stable surface to push on or pull up with their arms. Children walk with an assistive mobility device on level surfaces and climb stairs with assistance from an adult. Children frequently are transported when travelling for long distances or outdoors on uneven terrain.

Between 6th and 12th Birthdays

Level II Children walk indoors and outdoors, and climb stairs holding onto a railing but experience limitations walking on uneven surfaces and inclines, and walking in crowds or confined spaces. Children have at best only minimal ability to perform gross motor skills such as running and jumping.

Level III Children walk indoors or outdoors on a level surface with an assistive mobility device. Children may climb stairs holding onto a railing. Depending on upper limb function, children propel a wheelchair manually or are transported when travelling for long distances or outdoors on uneven terrain.

Distinctions Between Levels II and III Differences are seen in the degree of achievement of functional mobility. Children in Level III need assistive mobility devices and frequently orthoses to walk, while children in Level II do not require assistive mobility devices after age 4.

So, Summer has her work cut out for her! She has shown great determination so far...I'm sure she will continue with that attitude :) For now, we keep her busy (and mom too!) with all the therapy we can...Occupational/physical, Speech, Swimming, and Hippotherapy...helping her maximize her potential :)

Say "cheese"! And she does...all it takes is a glance of a camera to get her to pose.

Tom showing Summer pictures of her...she loves cameras...she sees mine out a lot!

We went to the Star Wars exhibit at the Pacific Science Center...

A Jawa....or "baby" as Summer labeled it. Everything small and cute is a baby to her :)

Be good, you will be...

These audio recordings at each display case kept Summer entertained.

Hippotherapy with Spud. Summer goes every Friday until June. Hippotherapy is a physical program that uses the motion of the horse to help kids that can't walk or need extra muscle development in their upper bodies...Summer has both issues.

She loves to ride, but gets very tired from the heavy stretch...they are hoping it will help strengthen her trunk and leg muscles. Fridays are good nap days!

In the arcade at Great Wolf Lodge

Summer thinks her toes are yummy...now that she can reach them...

Kissing it better!

Bathing beauty

Morgan was sad after getting hurt so Summer gave her hugs...and nose honks ;)

PS~ If you are still reading Summer's blog, leave me a comment :) It's nice to hear from you!

Making progress...who knew?

2011-03-08T16:51:00.000-08:00

Summer had a consult today with the feeding therapist at her Therapy Center. We haven't seen her since last October, so it was fun to hear what she pointed out. "Summer is a different kid!" :) That made me smile. So often, I wonder if I do enough, if all the therapy and crazy schedule is really making a difference, if Summer really is moving forward. Life, though busy, sometimes still seems to go in slow motion for her...everything is on her terms. Her feeding therapist is amazing....always upbeat and excited to see us. She feels like Summer has made HUGE leaps and bounds since she saw her last. Okay, I guess she has a point :)

6 months ago, Summer was still struggling with vomiting, both from a touchy gag reflex, and from constant ear infections. Any time she would get even the smallest tidbit of something on her tongue, she would gag and throw up. I couldn't even approach her mouth with a spoon, let alone put it on her lips or in her mouth, without her throwing up. She liked Cheetos, but would still gag if a tiny piece snuck it's way down her throat. Sometimes even something soft and mushy like mashed potatoes would offend her gag. This was so very frustrating....it felt like she could never get past it, and yet here we are!

As Summer demonstrated today, she can put things in her mouth (like chunks of Cheetos, bits of Bugles, and pieces of Pirate's Booty), suck on them, maybe bite off a piece, roll it around on her tongue with her mouth shut, and then get it out before it went too far and made her gag. She also discovered guacamole last Saturday :) A girl after my own heart! She even begged for more by opening her mouth...she actually swallowed bits of it too...all with me feeding her with a spoon! A couple of weeks ago, while in a movie, Summer was begging for my "brink". I figured, what the heck, she won't get any anyway, so I bent my Fruit Punch's straw over to her and let her try it out. I was surprised to see the fruit punch get up to her mouth and she swallowed it! Wow! I didn't even know she knew how to do that....pleasant surprise :) Of course, fruit punch is not on her menu, so for now she gets to "brink" water from a straw. She has also figured out how to blow bubbles into the cup.... very exciting progress! Her therapist told me there are some kids that just don't have the oral skills to eat enough to stay off the feeding tube...they will always need a little help. But, she feels Summer has those skills and great potential to make it work. She even asked if she could use the video tape she made of the session in her teaching. Way to go Summer!

While we were there, Summer stood up for about 2 minutes by herself...using only her hands on the toy kitchen to steady herself and my hands lightly next to her thighs. Woo hoo...her orthotic foot splints and leg braces and swim therapy has REALLY made a difference :) :) :)

So, now looking at all this information, I realize she really has made progress....and lots of it! Phew, I thought I was in trouble for slacking, haha!

Summer's new wheels

2011-02-17T15:01:00.000-08:00

Summer's new wheels...

Summer has gotten so big (she's now over 24 lbs.!) that she is just getting too heavy to carry. She still doesn't walk or crawl, and also has a hard time with the lack of support a stroller gives. After a chat with the therapists, they suggested we go forward with ordering a wheel chair. Summer is turning 3 in July, graduating from the birth to 3 program, and starting preschool in the Fall. The school is about 15-20 minutes away, so she will have to ride a bus :( The bus drivers/teachers are not allowed to carry kids to or from the bus and the class, so she will need a way to be transported. On one hand, I have a hard with this happening so soon. But on the other hand, I have to admit it will be nice to send Summer to preschool and Morgan to Kindergarten the same year....maybe I will actually have some free time? haha.

So...a wheelchair it is.

This is actually called a Kid cart. I personally feel it is simply a cute name for a kiddie wheelchair....trying to make parents like myself feel okay about it all. :p This is a temporary loaner from the therapy center until we can get Summer her own customized chair ordered. I had a hard time coming to grips with the whole thing, but I know in the long run, it will be better for all of us...

Well, I have to say one thing...Summer sure seems to love it!

Summer gets upset when we take her out of the chair...Morgan wheeled her all around the house, parked her, and read her stories :)

We used the chair today for the first time at swimming. Summer loves the height and it is really easy to push and manouver. My hubby and I have always been too tall for stroller handles, this one is the perfect height :) It is a lot heavier than a stroller, but folds up fairly compact. I'm sure the lady in the parking lot enjoyed a good chuckle at me wrestling with it when I was packing up though.

Lots of changes!

2011-02-16T23:23:00.000-08:00

Medically, Summer is doing fantastic! She now only has to go to her GI clinic appt. at Children's every 8 weeks! When she was a baby, we were there every week...this is a nice change :) At her most recent appt. at the beginning of Feb., Summer had gained well over a pound (she's now 24 lbs.6 ounces!), and had grown 3 centimeters. She is getting very tall and hard to carry. She still doesn't walk or crawl, so needless to say, our backs are feeling it. Summer's labs still continue to look great. Her liver function is great, and she is maintaining normal levels in all the areas they monitor. At this point, she is past the halfway mark for her predicted life expectancy! This prediction, of course, was made during her first bowel surgery at only 2 lbs. 11 ounces...they assumed she would be IV dependant, have all the side affects that would come from that, and need a bowel AND liver transplant. She is still NOT on the transplant list because her 10% she had left, is able to absorb enough nutrients to keep her growing, and still has NO sign of liver disease! Since she grew so much, the nutritionist also ok'd her to cut back on her feeding tube another two hours per day. She now has 8 hours off during the day, freeing her to try and be a little more mobile. She still doesn't consume food, but puts things in her mouth to taste them, and drinks water fairly well. Her gag reflex has gotten less sensitive, so I'm hoping she can start making progress in that department soon too...

Summer also had her first trip to the dentist yesterday. She did alot better than I thought she would :) Since she was born so premature, her teeth have grown in with very little hard enamel. She was also on TPN (her IV nutrition) for so long, it may have weakened them too. Despite these factors, her teeth looked pretty good. They are yellow and have some tarter build up, but this is to be expected. Good, strong enamel covers the layer under it, which is yellow, and makes our teeth look white. They have also noticed that kids who are G-tube fed, tend to have more tarter build up. So, we have to make sure and give her extra flouride to help combat cavities, which she may be more prone to.

When looking through the last couple of month's pictures, I was amazed at how many changes have been made in such a short time...no wonder I'm busier than ever now!

Summer has started a very busy schedule of therapy...Occupational (physical) and Speech every Tues., playgroup (like a structured preschool class), and aqua-therapy every Thurs. She loves the play time at the end of class...they have a couple of really cool swings :)

Fun, fun, fun! Summer loved her first day of swimmming therapy in January!

I caught her in the act...who gave her a pen anyway???

A budding artist...

Morgan's preschool class took a field trip to the firestation at the beginning of Feb.

Summer LOVED the fire truck!

Though content here, she was not at all happy about being removed from the fire truck...she wailed for the remainder of our tour.

Summer has discovered rolling can take her places :) She loves our hardwoods and laminate flooring. In fact, she will point at the kitchen floor and say "jumpin", when she wants to play on the floor. She scoots herself with her feet while on her back, rolls, and kicks "fast" as she calls it.

She often gets stuck in unusual places now...

A trip to the zoo on a day out of school. Summer and I were lagging behind and were rewarded with a walrus feeding :)

Summer's legs and foot muscles have always been very tight. Being a preemie, she is in danger of getting something called constrictures in her legs, hips and feet if the muscles are not stretched out, kept limber and used. She has been receiving therapy to help with this, but she is still so tight, it is keeping her from sitting, crawling, and walking. The therapists still feel like she will probably be able to walk someday, but her future is still uncertain. In order to give her the best chance possible, the early intervention in very important. In January, she got fitted for leg braces and foot splints. She has to wear the leg braces for 3-4 hours per day and the foot splints every day, all day. She even has shoes that fit over them so if/when she starts trying to walk, she will be used to the feel and weight.

Every new challenge brings another smile to her face. :)

Summer checking out her new legs

Look at Summer...she has gotten so tall.

Little drama queen...

Little Tom was trying to get her stand...she wasn't going for it. When she cries now, she starts crying, clasps her hand over her mouth, and in a very pathetic voice, says "SAD".

Summer seems pretty darn happy despite her double "casted" legs!

She actually flattens her feet with all her gear on...I guess she really has no choice ;)

She has been wearing the splints for about a month now and we have already noticed a HUGE difference in her legs and feet :)

Summer's first real haircut. Since she still hangs out on her back alot, she has a spot that rubs the hair short. Other parts of her hair have gotten long around it and it was starting to look like a mullet. So, it had to go.

Riding a duckie at the park...she loves to say "Wheeee"...I have to make sure she's balanced and take the picture quick....before she falls off. Yes, she has fallen off things bofore with this tecnique :( Bad, bad, bad, paparazzi mom!

Summer's Cat in the Hat shirt...she loves him :)

New shoes! I got these shoes at the Orthotics center. They are huge on her feet, but not when she has her orthotic foot splints on. They even have a squeeker in the heel.

Reading with dad and Morgan. Summer's new favorite books are the fun rhyming Dr. Seuss stories....especially "The Cat in the Hat". She also loves the cartoon Cat in the Hat show on PBS. She calls it "Hat" or "Cat" when she wants to watch it :)

Little miss on her throne at playgroup. She tends to push her hips forward alot and slide right out of every seat she is in, so the therapists are trying to add some props to the seat to help her stay in it.

She's getting the little stuffed monkey ready for the

"Monkeys jumping on the bed" song...her favorite :)

...and bonked his head! "Bonk!" Summer says as she bonks her own head with the monkey, followed by "owwwwch"... :)

"oh, poor monkey...give him a hug"

Popping bubbles!

Again at swim class. Last week she actually grabbed onto the wall and played "peek-a-boo" with me :) Holding onto things can still be a bit challenging for her...

The ducky quacked her up! he he he

Stretching a little far! It's a good thing for Summer that she now has an 8 hour time period every day that she can be un-hooked from her feeding tube! ...it tends to restrict her at times...I have even heard her yelling at it, "BACK. PACK!" haha.

Taking a stand

2010-11-21T16:13:00.000-08:00

Summer's been working hard for the last few months at balancing and holding herself up to the couch on her knees....
...so I tried to get her to stand up by pushing up on her bum...."Whoa", she said....when she gets tired she says "heavy"...yes, she is getting heavy for me to hold up too...haha.

I let go...then she figured out how to use the cup holders to help her...

....she was delighted!

...though her legs aren't straight and her feet are not flat on the floor, YET, she will get there! This is one determined little girl :)

Spinach milkshakes, a waterfall, and some pumpkins.

2010-11-11T20:13:00.000-08:00

Yum. I know you are thinking it. So, let me explain.

A recipe for the perfect Spinach/potato milkshake:

2 Tbs. Organic Spinach/potato baby food puree

4 oz. Elecare formula (Hypoallergenic, Amino based, elemental goodness)

A plastic bottle

A huge syringe and tubing

Measure 4 oz. formula into the plastic bottle, add 2 Tbs. food puree, secure lid, and shake until blended. Mixture will be a light, delicious green color. Use large plastic syringe to suck up mixture, add tubing, plug into Summer's tummy, and enjoy!

Again, I will say it for you, YUM!

Summer's feeding therapist suggested we try "real" food through her G-tube. She feels that the food will help with Summer's vomiting episodes, and help her digestion and overall well being. We have been giving her one feeding of this delicious concoction every day for the last few weeks and it seems to be doing the trick! Summer hasn't had any major vomiting issues for the last month and a half :) She has also been gaining weight like a champ....1 lb. 11 oz. in the last 20 days! :) :) :) She now weighs in at 23 lbs. 6 oz.! This is great for her, not so great for our backs....groan. Oh well, the price we pay for success :P We'll take it....Summer has struggled with her weight for the last 10 months.... A couple of days ago, I spoon fed her some baby sweet potatoes. In the past, she would gag and throw up if someone else was controlling the spoon, and she wouldn't put it in herself. She only gagged a little bit, then actually swallowed about 2 Tbs. of it! Wow, we were excited! I am hoping this is going to be the continuing trend from now on...

Summer has been making lots of little progressive steps too. She is our little parrot...we have to really watch what we say, haha! Here's some more of what she's been up to...

Summer loves to read...it relaxes her :)

Morgan loves Summer....she always wants her to cuddle in her bed and read.

Daddy put her in this box and she thought it was hilarious....she blows kisses now too.

Summer does well when we put her on her knees. She loves to go through the books in the cabinet.

Her first bath in the sink. She is still very unsteady so she was very slippery....had to snap this one quick ;)

About a month ago, Summer started lifting up on her knees while holding onto something. She says she is "jumpin". Her legs are getting stronger all the time...she can stand for a bit while holding onto the couch! She has a long way to go, but she is very enthusiastic and excited that she has realized she can do more :)

Summer enjoyed a cupcake during Morgan's preschool...don't think she actually ingested any, but she sure enjoyed crumbling it!

Summer hitching a ride with Grandma at NW Trek Wildlife park. She loves to be outside and loves the animals.

Morgan and Summer

Summer at the park

Summer's cousins, Katie and Kim visited in Oct.

Look at Summer! It was just a couple of months ago that she wouldn't even put weight on her legs.

We visited the park with her cousins...Obviously, Summer cannot read....she tossed this fry at a duck and said "Hab it!" That was one happy duck ;)

Snoqualmie Falls with Grandma and Grandpa

Grandpa Norris adores her :)

We visited the Pumpkin patch with Morgan's preschool...check out mommy's little pumpkins ;)

Mom, Summer, and Morgan

Cousin Kim and Summer at the Pumpkin patch

Summer!

Summer and my friend's baby, Emery. He is rolling all over the place and loves to go right for Summer's backpack. She is getting a little protective of her backpack, but thought he was funny. We have been putting these braces on her legs every day for at least an hour, it's helped the muscles in her legs stretch a great deal...this has made a huge difference for her :)

Summer came with us to little Tom's swim party. She shrieks and giggles every time she catches sight of a pool. She must have kicked her legs for about 1 1/2 hours straight in the water :) The therapy center that she goes to, has recommended her for water therapy. She will hopefully be starting in the next couple of months. She's going to love it, I can't wait!

Summer and Andrew

Summer used to have a hard time sitting in these wooden restaurant high chairs, but does much better now. She has also started refining her fine motor skills. She loves to try to color and draw...look how well she holds this crayon!

Halloween Trunk or Treat at our church. Summer got a sucker and held onto it the whole time. Morgan would say "Trick or treat" get her candy, and Summer would say "Thank you" each time. Her diction is really clear.

Morgan and Summer

Halloween night

She can say "pumpkin" and "Howoween"!

Grandma and Grandpa came trick or treating....Summer wasn't real sure she recognized them, haha.

LOOK MA! No hands!

2010-09-13T14:01:00.001-07:00

It's been a long time coming, but look at her go! Summer can sit on her own (after we place her that way, but we'll take it!) for a couple of minutes and even play using two hands at once! Wow! She has been getting very frustrated lately that she can't do all she wants to. Up to this point, she has been able to roll over, but doesn't do it very often. She also has had a hard time keeping her balance to hold herself up on her own. Even when in her highchair or Bumbo seat, she would get tired and end up leaning to one side, then couldn't straighten herself up. We took her swimming at Great Wolf Lodge for a couple of days and for some reason, she now has the ability and desire to move more and sit up :) We are so happy to see progress....it has been a long time since she has made such a BIG leap!

Today was speech therapy and the program coordinator came with her. We talked over goals for Summer for the next 6 months, reviewed our previous goals, and even checked off a few she has completed :) We are stepping up on both OT and Speech therapy from every other week to every week. Though my schedule will fill up a bit more, sigh, I am excited to think that this will help Summer progress faster and further....keeping my fingers crossed!

Here's some random cuteness too...
Morgan reading a story to Summer

Riding the carousel at the zoo

Summer LOVES to swing!

Summer speaks out....

2010-06-19T00:31:00.000-07:00

On a lighter note....

I have to share something that happened a couple of weeks ago at church. Summer is somewhat like a celebrity at church these days. We have been around so long that most of the people who have been here in this area for at least 3 years know of our family saga. Every week I come to church with my cute, happy, cheerful little girl...we get adoring looks from the grandmas and ah's and oh's from many others. They have watched her go from being every color in the rainbow, face taped, oxygen in tow, tubes dangling, backpack weighing more than her... to her naked cheeked, healthy looking self she is today.

So, this "danty" little girl on the pedastool decided to show off her stuff. The Relief Society room was fairly silent...not many babies in tow that day for some reason. So, with the teacher in mid-sentence, Summer let fly with the loudest, longest string of gas she could. At first, it caught everyone off guard, then, as it continued, there were scattered giggles. When the teacher paused, Summer continued for what seemed like an eternity...though was really only about 15 seconds. Everyone smiled in my direction as I smiled a sheepish smile back and Summer made her announcement....

"BURP!"

This is what she says anytime a gas-like noise comes from either end or she throws up, haha! A
nd, all it took to learn it was my hubby asking her if she burped once...she was obviously impressed! Oh, my daughter is so demure! I excused myself and headed for the restroom to change her. Silly, silly, innocent girl :)

Her language has been taking off recently with quite the list of words she likes to say including; burp, happy, mommy, daddy, hi, bye, baby, ball, uh oh (some of her firsts), grampa, nose, eye, toes, ow (this one she says with a grin as she gouges your eyes out or scratching you), dis (this), and most recently, woopsh, wheee, oh, whoa, no, don't, and a few more she picks up daily. It is so fun to hear her talking! We start speech therapy next week to help her catch up...she's off to a great start!

The vicious cycle...

2010-06-17T18:08:00.000-07:00

Summer has spent the last few months dealing with ear infections. Okay, though this is a normal baby thing to do, and not a real surprise in our house, I am ready to be done with it! She has had 6 infections since February! And, being the unique and wonderful child that she is, she does it in a fashion all her own. When you think ear infection, you generally assume the kid has cold symptoms...cough, runny nose, sneezing, etc. But, not Summer! Her symptom of choice is projectile vomiting! Yes, you heard me right...the big up-chuck.

The first time this happened, she had been throwing up for a couple of days without it letting up. This was shortly after her new G-tube was installed, so naturally I assumed she was having bowel issues. Off to the ER we went for tests. Expecting a bowel obstruction....both the docs and I....they ran the typical tests to check for that. After about 6 hours in triage, they said, oh, I guess it must be the ear infection! Uh....OKay. I have had 2 out of 3 of my other kids who have had 2 sets of ear tubes by age 2, and neither of them EVER projectile vomited. I guess Summer is just "lucky".

Their theory was that since her stomach is full most of the time, the change in pressure in her ears and the dizziness it can cause, mixed with the full tummy, made her nauseous. Oh, yay. So, they sent us home with antibiotics in hand and directions to follow up with the pediatrician. Little did I know how often that would be!

So, started the cycle...barf, ear infection, lose weight, so on antibiotics. Gain weight, get ear infection, barf, lose weight, go on antibiotics.....and so on. She has managed to be between 20 lbs. 15 oz. and 21 lbs. 8 oz. now for the past 3 months. This is not exactly ideal, but the transplant docs aren't too worried since her rolls are still in tact :) They figure once we get the ear infections taken care of, this cycle will end and she can go back to gaining weight.

Well, in the mean time, she has had several different antibiotics....two of which have worked, but one she took two different times, caused some very serious side affects which, you guessed it, landed us in the ER! Her symptoms were so horrible they thought she had a bowel obstruction, again...she had a VERY bloated belly, and was obviously in pain. Fortunately, it ended up being a reaction to the antibiotic, Omnicef. Unfortunately, it took the ER trip and 3 days of horrible tests to find this out....including an x-ray, an ultrasound, blood work, and a Barium enema with an upper GI study. Poor baby. The barium enema did end up releasing the extra gas and relieved the pain.....but, it was NOT pretty!

So, the next time she took Omnicef, she started showing the same symptoms and to the Internet I went! I googled the med and found some information that was a big "DUH" to me. Here's just a few of the gems that she had in common with the list of "rare" side affects:
vomiting
constipation
severe abdominal pain
dyspepsia (excess gas)
diarrhea

Some symptoms that she didn't have, but would be devastating were: Upper GI bleed, hemorrhagic colitis, and psuedomembranous colitis, and bloody diarrhea.

Anything with the word "colitis" in it is a real turn off for this kid! So, no more Omnicef for her!

Another approach they have tried was antibiotic injections....2 shots each day, 3 days in a row....this helped the ear infection, but made Summer cry for an hour after each time and made her scared of her nurse. Since she has seen her A LOT lately (we were at the pediatrician 8 times in one month!!), it makes her cry every time we were at the doctor. It took almost a month for her to forgive poor Trish.

So, we just finished our recent dose of antibiotics and have been to the ENT at Children's. They tested her hearing and did not find anything glaringly wrong...in fact, her ears tested fairly well :) They also asked how she fared with each ear infection. When I explained her lovely reactions, they said, "so, you thinking tubes?" I said, "yep", and off to the surgery scheduler we went. Easiest appointment ever! The earliest they could fit her in is Aug. 18....so we are holding our breath until then.....gasp!

Overdue update

2010-04-24T22:23:00.001-07:00

Look at her go! Summer has been making progress recently in many areas :) This pic was taken today while she played with Morgan, who was sitting on the chair. She still can't sit up on her own, or pull herself up, but if I put her on her knees, she can hold onto this kid size chair for a few minutes. Her neck and back are getting stronger all the time.

So, it has been a while since I wrote any updates and Summer has been busy! She has been to the beach, had her G tube changed out, grown her hair long enough for pigtails, gained a little wighed, battled ear infections, eaten cheetos, and even met a dinosaur! But, what better way to show what's she been up to, than to post lots of pics?

Picnic in March to Carkeek park in Seattle...Summer loves the wind in her face, especially when she is up high on my back ;)

After a long day, Summer took a load off with her Wooley Mammoth as a pillow....zzzzz

Little feet, not so little anymore! They are about twice as big as they were when Summer was born....though still tiny in comparison to her age :)

Little eyes....we have had a couple of trips to the Opthomologist to check her eye progress. Both eyes are working together now and testing the same. She can focus and lock in on objects at a close distance and her farther distance vision is coming along. :)

Likea little green pea :)

Summer loves the remote and screams at my hubby if he dares to use it!

Grandma and me!

Ok, done with the glasses now....

Wheeee! Tom loves to give Summer piggy back rides.

You know, most people hate it when you read over their shoulder....
This dinosaur at the Science Center, smiled at Summer...she got a little worried...
Summer is getting big! She is now taller than the Space Needle...wow!

Summer at therapy...we have one of these balls at home...she thinks it's great fun to bounce and roll around on it. Colleen says this will help strengthen her back and abdominal muscles. We go to physical therapy every 2 weeks, alternating with feeding therapy. Her feeding therapist is incredible! At our last visit, she introduced Summer to puffy cheetos....they are crunchy, salty, and they melt in your mouth. Summer has a hyper gag reflex, so alot of what even gets near her mouth makes her throw up. Getting her to really eat is going to take a lot of time....

Summer is still pretty stiff in her legs, so we work with her muscles to get them to stretch.

The girls are packed and ready to go on our Spring Break trip....the day after Easter :)

Easter moring....Summer got a ball in her basket.

Grandma Norris...Easter

Did I tell you how much she loves my camera? Maybe she thinks IT is her real mommy?

Grandpa Norris

It was chilly, but we always have so many Easter eggs to hide, there is no way we can move indoors!

Summer was most impressed with a shiny orange egg she played with

Morgan and Summer

Spring Break! We went to the Oregon coast for the week with some friends from Utah. It was beautiful....we had a great time!

Daddy and Summer at the Sea Lion caves

Summer and Leah...lunchtime at the beach house

@ the Evergreen Air and Space Museum....the kids had fun using Summer like a race car!

Summer is "tired" ... haha...

Andrew and Summer

Andrew, Summer, and mom in the hot tub at our beach house...Summer's first official swim!

Summer had a great time in the hot tub....we had all 9 kids in there at one point!

Me and the kids

After splashing around in the hot tub, Sumemr was bushed!

Summer and Bekah playing on the beach

Me, Tom, and Summer on the beach in Lincoln City, OR

Enjoying a cheeto at a rest stop on the way home

Even not eating in your high chair can make you very sleepy!

After a lesson in proper pigtail accessories, Summer's new doo is complete!

...and this is what it looks like after a good cheeto/snot rubbing and some cuddling with daddy....

Wow! It got even better in the morning....only the bathtub can tame this mane!

And then, there's the G Tube saga......

With everything comes a saga....the G Tube has been no exception. She had a "Bard" button placed surgically, Jan 21, 2010. Just a few weeks later, she started developing granulated tissue around the site. This is fairly normal, especially in kids who have had their button sutured in, and can be painful. Summer's started to rub raw and bleed, so we went in and had it cauterized with silver nitrate. They applied it and sent me home with some to repeat if needed. At the beginning of April, just before we went out of town, I cauterized the site again. Some of the silver nitrate got on Summer's fingers and mine too. It took about a week for the staining to go away, but getting in the hot tub helped it go away quicker :) At first, I thought we had been burned by it somehow....not a fun way to start our vacation....fortunately, it was not the case!

This is what it looked like before....with the Bard button.

The Bard button has tubing that plugs into the small hole in the rubber. It plugs and un-plugs so easily that Summer figured out how to do it herself. Silly girl....we had to make sure she always had a shirt on, or the minute we turned around, she was un-plugging it, the pump was still pumping formula and leaving a huge puddle...

I guess she thought we didn't have enough to clean up?

2 weeks ago, we went to Children's and had her G Tube changed to an AMT Mini-one button. We had to go to the general surgery clinic and see a nurse practitioner. I knew how they were going to do it, but it was still NOT pleasant....especially for Summer, of course! She didn't use anything to numb the area, grabbed the Bard button, and RIPPED it out! Literally! The Bard has a mushroom shaped valve that holds the button in, that doesn't inflate or deflate when inserted or removed. She explained that it would feel much like a shot, and summer would settle down quickly. Well, after I heard the loud POP!, Summer screamed in pain, like I hadn't heard her before. Poor baby.... The nurse then inserted the new button (which, thankfully, is just the tube with an inflatable balloon at the end), and handed her to me. Summer kept crying and looking at the nurse... She was very sore for about a week, but is much better now.

Close-up of the new button....I love it! It works with a key hole method. The tubing end has to be matched to the slot, pressed down, and turned to "lock" it in place. I was given an extra button that I can replace if this one is faulty....no more painful ripping out of the G tube! As you can see, her belly is looking better all the time...her newest incision is healing nicely, and her old Broviac site is healing well too. And, though it is still horrid, her abdomen looks better too.... Yes, folks, this girl will NOT wear a bikini ;)

Happy Summer...loves baby dolls!

At this point, Summer weighs 21 pounds, 4 ounces! Thanks for the continued prayers and well wishes in her behalf...she has definitely been blessed, and is a blessing in our lives! :)

Ham central!

2010-03-09T20:51:00.001-08:00

Summer is such a ham! Whenever I pull out the camera, she knows just what to do! In fact, I was playing around with the settings while we were driving to Tacoma and she whined at me until I turned around and took a picture of her....ahhh, I have created a monster! Here's just one of many I took to appease her...

Last month, Tom's grandpa Sheldon passed away. He was a great man who loved his grandkids and great grandkids very much. Tom's sister, Sue drove up from CA for the funeral....this was her first meeting with Summer. They loved each other....Summer kept grabbing her cheeks and giving her big, sloppy, baby kisses....it was cute.

Planting a kiss!
The grounds were beautiful...I took advantage of the scenery :)

Grandpa Cameron....he is a great man and wonderful Grandpa :) He just found out he has cancer and is having surgery tomorrow...he told me just after I took this picture that he hopes to be around to see Summer walk one day...we are praying this is going to happen...

Cuddles with Aunt Sue

Refried beans? Better worn than eaten...

Summer's first measurement on Grandma Cameron's hall door...she's not too far from Jared :)

I told you Aunt Sue had fun with her!

Ham...

...more ham...

....now come the giggles...

Summer and her backpack buddy

...she loves the backpack!

Raspberries are a recent favorite :P

At the end of the day, she loves to cuddle with whoever will hold her....Tom is a great big brother :)

Never a dull.....

2010-02-27T17:49:00.000-08:00

...MOMENT! That is what the doc said the other day when we went in for a last minute clinic visit. Boy, that is so true. Just when things start winding down a bit, we go and get exciting again.

Last weekend Summer was miserable. I went on an all day trip with little Tom...when I got home, my hubby said Summer had been crying for most of the day. She wouldn't settle down and was very uncomfortable. He ended up holding her most of the day. Her belly was very bloated, so we tried venting the extra gas from her G tube site...this gave her a little relief, but it was temporary. She had also thrown up a few times, which she does do, because of reflux, sometimes anyway.

Sunday morning she seemed okay, but by afternoon the gas was building up again. Tom's family was in town for the weekend, so we went to visit them before they left that afternoon. Right after we got there, Summer started acting very uncomfortable again. She threw up a couple of times, and was starting to be in a lot of pain. When we picked her up, holding her under her armpits, she would cringe, and crumple up her body into the fetal position. We couldn't move her very much or she would start crying. We ended up holding her quite a bit and venting her tube a lot. This helped for a short time, but she returned to being miserable fairly quickly. We got home around 7 and had to hold her until she went to bed.

Over night, Summer woke up periodically crying, but would go back to sleep. When I got her up that morning, she was still very bloated and in pain. I called the nurse to see what we could do. She said it sounded like maybe Summer was swallowing extra air and we were to vent her more often and try gas relief drops. She did okay for most of the day, but refused to move much. Every time I opened the G tube plug, air came whooshing out, followed by some formula. Her belly was very hard with air....

She had another restless night and seemed to be just as bloated, if not more so, the next morning. I called the nurse....they managed to get us into clinic that day at 2 PM. This was after me commenting to a friend that I wished Children's Specialty clinics were like our Pediatrician's office.....usually we have to schedule an appt. at least 2 weeks, sometimes a month, in advance! We chucked our plans for the week (which were just a couple more medical appts. anyway, oh, darn, ha ha) to prepare for a possible hospital stay... and went in to see the GI doc. Summer, of course, was still smiling....until I moved her. I showed the doc the pain she was experiencing, so she ordered some tests. She was worried that Summer might have a partial bowel obstruction....something called a stricture (a narrowing of the intestines that creates less flow and backup). She was still tolerating her feeds, wasn't vomiting, and was still stooling, so she didn't have to be admitted, YAY!

First we did a blood test to check for anything brewing....then some x-rays. Nothing significant was found, so we went home and had to return the next morning at 9 AM for a belly ultrasound. I had packed my overnight bag, just in case, so kept in the car.... The ultrasound showed nothing obviously wrong, but they couldn't get a good picture of certain areas because of all the extra air in her belly. We had to meet up with the nurse for a vitamin K shot, so she also let us know at the time that the doc wanted to do a lower GI study that afternoon. We had 3 hours to kill, so I went out to lunch....Summer watched and threw chopsticks on the floor. :)

We headed back in for the test a little early, but still ended up waiting a long time....when they got us in the radiology lab, the tech asked if Summer had had any surgeries.....YES, a few. So, we had to wait for the radiology doc to be done with another test before we could start. Poor Summer was so uncomfortable....then came the enema! Yup, a barium enema....lucky girl. She was SO upset, the nurse was blowing bubbles and everything, but Summer wasn't thrilled AT ALL! They had to strap her on a rolling board around her chest and belly....and tape the catheter to her bum. I was so glad she doesn't have a nasty rash right now....I'm sure Summer would have preferred to skip the tape all together.... I held her hands while she screamed the whole time and got to watch the fluoroscopic study on the screen. I was amazed how little her intestines really are! Usually, looking at a pic of normal intestines, there is quite a hefty pile of them, Summer's looped up and down maybe 3 times and are very dilated...they look "fatter" around than they should be. I had known they were dilated because the surgeon who placed her G tube had commented that is was a very good thing for her....more surface area to help with absorption :) The doc mentioned she had very little....I filled her in on Summer's success and she was very happy for us. She just kept saying, this is HUGE (off TPN and thriving)....yes, but huge just isn't really even the best word to begin to describe her success. She agreed. She told me that kids like Summer are very special...they are usually the most empathetic, sweet spirits that bring a lot of joy. Both of us got a little choked up...I told her we have already seen so much evidence of that with her...she lights up every room she enters!

After the torture was done, I cuddled Summer....it took her a while to settle down, but the nurse read her a book, which she gave to her, and distracted her to the point that she stopped crying :) The doc showed me the pics they took...no strictures! The bowel was very dilated, but was evenly so, which meant no stricture (narrowing). There was still no reason to keep her overnight....phew!

We went home, but I left my packed bags in the car.... The barium had created quite the impressive blow out in the car and it just kept coming. Summer was acting like she was feeling a little better too. She had several nasty diapers and was now burping a little more than she had been. She also acted like she was in less pain and could move around a bit. She even rolled over that night to grab a toy! I talked to the nurse the next day...she was encouraged that Summer was feeling better, but was going to check with the doc to see if they wanted to do any more tests. Through the day, Summer had several blowout diapers and was getting less and less bloated. I talked to the nurse again around 5....she said since Summer was feeling so much better, they were going to hold off on doing the upper GI study for now. They were starting to think maybe Summer had a funky virus that has been going around. Some of their other patients have had to be admitted for dehydration related to the virus and had some similar symptoms. Morgan had thrown up that morning as well, so this theory seemed probable.

By now, Summer was feeling so much better! She continued to be even happier and less bloated as the weekend went on. She had returned to her "old self"....kicking, chatting, smiling, laughing, even rolling a bit....she hasn't done this for over 5 weeks....since her G tube surgery! We figure the next time Summer is feeling sick, we can hook her up with a barium enema! I think she might still have an ear infection...do you think it would help? Ha ha....okay, she might not appreciate it very much, but hey, it seemed to do the trick this time!

Lookin' Good!

2010-02-09T21:50:00.000-08:00

Summer is really loving her baths!

This week has been very busy with lots of appointments. Summer saw the surgeon yesterday and all looks good. Her incisions are healing nicely and the G tube is working well.

Today we met for the first time with her new feeding therapist. They put her in a highchair fit with a foam insert to give her good mid-section support. They feel she she will be able to focus better on eating if she isn't constantly trying to steady herself. The minute she sat down with all the supports, she was excited about the food in front of her. She grabbed at things, put them in her mouth, and even chewed a little. The therapist was very impressed that a baby with her medical history could do so well orally at this point. She kept congratulating me on a job well done and said Summer was a real "wow"! This was a great boost....it makes me feel like Summer really will do well quickly :)

The next appt. was with the Opthomologist. I was worried that Summer's eyes were getting worse....but I was wrong. :) Her eyes have been turning in a bit here and there, but we have noticed for the most part, they are tracking together well. After the eye exam, she told me she was very happy with Summer's eyes. At the last exam, her left eye was testing better than the right at 20/94. Today, they both tested at 20/130...though technically, this shows her eyes to be getting "worse", this is actually better! 20/130 is still well within the normal vision range for a baby Summer's age. And, both eyes are testing the same...that means her left eye is no longer dominant, causing her right eye not to work as hard, resulting in a decrease in vision. Yay! No more patching needed! Phew.....patching has been very challenging with Summer's recent sicknesses and the tape on her cheek from the NG tube. She also hated the patches and would scream and cry and rip them off anyway..... I told the doc this was a huge relief and she told me maybe this was just for me....something I needed. Amen to that!

Good news is always so encouraging...it's so nice to have 3 bits of it in a row :) Thurs. Summer has an appt. with the GI clinic....we will discuss her new eating habits with the nutritionist and where we go from here.....

Tubby time hair!

The only way to achieve curly hair on this kid is with lots of shampoo ~:)

Sweet, sleepy baby --

Summer's week, from a trip to the ER to her 18 month check up...

2010-02-05T15:56:00.000-08:00

This last Monday Summer ended up in the ER at Children's....here's what happened.

Last Friday, while I was loading the kids in the car to go to a family birthday party (of course, kids have the most impeccable timing!), Summer started throwing up. She first threw up something that looked like she had eaten a pound of sand or maybe some purple play dough. Since I know either of those were impossible, I was a little worried about what it could be. It had just been one week since her G tube surgery, so I thought it might be some kind of side affect...it was. I called the GI nurse and she said it sounded like "old" blood....like scabs. Apparently that can happen after stomach surgery....phew, it only happened once. Until.....

We got to my sis-in-law's house for the party and Summer started throwing up again. 2 more times included the old blood, then she continued to throw up at least 10 more times. My in laws live 45 minutes away, so though I was tempted to throw the kids in the car and go home, I didn't want Summer to have problems while I was driving home without another adult. So, we stuck it out....went through several sets of clothes and my sis-in-law's towel/blankets. I called the GI doc on call to find out what to do. She told me to turn off Summer's formula for at least an hour, then start feeding her Pedialyte. If the vomiting continued to be uncontrollable, they wanted her to come into the ER. The hospital was on divert (they were over full and sending patients to other hospitals...this has never happened before), so if she needed to be admitted, they would have to "squeeze" her in.

The Pedialyte seemed to calm her tummy down and she slept all night. We started her formula back up at a very diluted concentration and she did okay for most of Saturday. On Sunday morning we were woken up at 7:30 by Summer projectile vomiting. She was coughing, sputtering, gagging, and crying. I rushed into her room to check on her.....she was drenched. Her bedroom floor was even soaked next to her bed....poor miserable baby. Summer looked terrible too....she was pale and had dark circles under her eyes. I cleaned her up and gave her a bath...so nice we have this option now :)

We stopped her food again and started up the Pedialyte. After a bit, we gave her formula again. She threw up 3 or 4 times during the day, but was looking a bit better as the day went on. She was fine when she went to bed, but at 4 AM I was woken up by the projectile vomiting again. I turned her food off for an hour, cleaned her up and started the Pedialyte again around 5:30 AM. We went back to sleep for a couple of hours, then I had to get the boys off to school. As soon as the boys were gone, I called the GI nurse to see what she wanted me to do...she called me back a few hours later and said the doc wanted her to come in to be observed over night, possibly two.

Though it was still afternoon, we had to go through the ER...the specialist clinics can't just make appts. like a standard doctor's office can. So, I finished getting packed and off we went. We got to the ER around 2 PM and waited almost 2 hours to get in.

They checked her out...no bowel obstruction, like they had feared, no G tube problem. Summer has a nasty ear infection! Something so simple, yet it was causing such a bad reaction. She is currently running 105 ML's (amost 4 ounces!) of formula per hour constantly, so the dizziness caused by the ear infection was making her nauseous, causing the projectile vomiting! Phew! Thankfully this is something routine...10 days of antibiotics and she'll be good as new! :) By this time, it was 6:30 PM....but, we got to go home after we picked up her prescription :)

We ran the Pedialyte through the night and into the next morning. Then we ran half formula, half Pedialyte until Tues. evening, then back to full feeds. Summer was feeling so much better by then. She had had 3 doses of Amoxicillin and was obviously improving...no more vomiting!

Time is flying by, Summer was 18 months on Jan. 14th, and I forgot to schedule a check up appt....too many other appts. keeping me occupied! So, Thurs. we went to her 18 month check up...

Summer has gained back a little of the weight she lost while sick....she's now up to 20 lbs. 13 ounces :) According to the typical 18 month old growth chart, she is in the 7% for weight, and 20% for height...she sounds very long and skinny, but she does have some impressive thigh rolls ;) Her growth chart looks great, despite her recent weight fluctuations. The doc also checked out her ears...they both still looked very red and inflamed, so he had us discontinue the Amoxicillin and start Omnicef instead. She is still doing great and has no more vomiting episodes. Though she does have a light cough sometimes, her lungs are clear. While the doc was peaking in her throat, he discovered 3 more teeth that just popped in. So, in addition to the new tooth that came through on the bottom a couple of weeks ago, she now has a total of 8.... Yay Summer, all the better to chomp with my dear!

Next week she has a post-op appt. with the surgeon Monday, her first feeding therapy appt. and opthomology follow up on Tues., then Gi clinic on Thurs. Life certainly doesn't have time to get dull around here!

Splish, splash, Summer's takin' a bath!!

2010-01-30T19:16:00.000-08:00

Now that Summer's Broviac (IV) is gone (you can see the stitches and steri-strips on her right side), she is water proof! It's amazing what little things we take for granted....like being able to take a "real" bath. Up to this point, Summer has gotten a sponge bath just about every day in her bed. She hasn't really liked it much since she has to be hanging out, cold, and wet.

Yesterday I gave her a small dip in the baby bathtub we have been using with the hammock in it. This tub, is, of course, made for a much smaller baby...but, since Summer doesn't sit up on her own, this was a good option to keep her from being immersed. I took the hammock out and set her in it....it was much too small, but we made it work.

Today I climbed up in the attic and brought down the bigger baby bathtub we have had for years. Our other kids have all been so big at a young age that we had to search for this tub. One of our sons was 20 pounds by the time he was 6 months old! Thankfully, Summer, at just over 20 pounds, fits just perfect in it :) She stayed in the tub until nice and pruney, kicking, splashing, and giggling. I think it's safe to say, she likes the water :) Morgan even climbed in beside her....it usually takes a force of nature to get her in the tub! I'm sure Summer would agree with me if she could....I love having one more bit of "normal" added to her life :)

Oops....water got in her eye...

...all better now!

Yay!, but what is this stuff?

Summer wasn't so sure she should put her feet and hands in it...

2nd try....she loves this deeper tub :)

The girls

Summer loves barbies...she had fun with this mermaid

Happy bath day!

Ooops!

2010-01-28T08:22:00.001-08:00

Every month we have a certain week we are supposed to order feeding supplies for Summer to last the next month. Well, this is our week to do it....when I checked the cabinet that we keep her formula in, I discovered something odd. They normally send us 19 cans a month to take care of the amount she drinks, but I still have 17 cans in there! Wow....have I not been feeding her? That is obviously not the case, just look at those thigh rolls :) This has been happening most months, but it is usually not this many cans. I have just been dismissing it since whenever we go in to the hospital for a few days, which we have several times in the past few months, the formula sits her accumulating.

OK, so bad mommy! I thought 17 cans might be a little ridiculous, so I called the nutritionist to double check our recipe. Sure enough, I have been mixing the formula wrong for 15 months! Doh!! Usually, when making a formula bottle, most people put in the amount of water they need, then the scoop of formula, and mix. I have been doing this. Well, for Summer's recipe, I am supposed to add the formula first, then water to the amount I need. This, of course, makes a huge difference in water volume! Her formula has not been as concentrated as it should be, so she is being pumped full of lots of extra water she doesn't need.....and I have wondered why her diapers are the way they are?

So, live and learn. Perhaps this was divine intervention of some sort....maybe the extra water helped her along faster than they thought she would? Who knows. We started mixing it right yesterday and her stools have already slowed down :) :) :) This, is a good thing!

Yesterday Summer started getting a diaper rash again. Not happy about this! She has gone 4 months rash free... The poor little thing was so sad, I left her little bum hanging out most of the day to try and air it out...this does not make for a happy baby. And, not to mention the lovely mess it creates. Ah well, I guess with the good comes the bad at times....All the successes were maybe too good to be true.

Still, her Broviac is gone, the nose noodle is gone, and the G tube has been working/healing nicely. Her incisions are looking good too. Today is one week from surgery, so tomorrow is bath time! Good thing....maybe it will help her rash to soak a little :)

We are really loving our tape less faced girl :) It's even hard to compare how she looked with the nose noodle already!

The Legend of the Short Gut Wonder!

2010-01-22T22:43:00.000-08:00

Here she is! One day after surgery....no more NG tube or Broviac (IV)...

You can see a few new teeth coming in.

Beautiful isn't she?

I have decided to rename Summer's blog. This visit to the hospital has confirmed all our beliefs that she truly IS a MIRACLE! And, I have a feeling the docs are going to be talking about her for a long time :)

Yesterday Summer had her surgery...removal of the Broviac and G tube placement. As usual, we talked with the surgeon before hand. He has been very concerned about where to go in to place the G tube. So concerned that he ordered copies of her chart(s) (apparently it is a 9 volume chart!) to review the history of her gut surgeries. He was worried that he could jeapardize her intestines and impeed the progress she has made if he went in at the wrong place. Her stomach is now behind her intestines and he felt like there would be a lot of scar tissue to work around. There was a big possibility that her liver may be inflamed and her intestines could be fused to the abdominal wall. Yikes! So, he explained to us that he may have to make a much larger incision in her belly than originally thought, creating a large "T" scar....cosmetically not a great option. Or, he could start in the old incision and back out if he felt it was too risky, then cut into the belly higher up.

When he got into the OR and Summer was asleep, he was able to examine her better...he discovered her very dialated intestines (a good thing for her...more surface area on them means better absorption) were very close to the surface. In fact, under her incision scar, there are a few layers of skin, but no abdominal wall to protect them. If he would have cut into that, it would have been "ugly", he said. He told us that her liver is in excellent shape, which is unusual in short gut kids...it is a nice healthy size, not enlarged like it would be if it were damaged or diseased.

When surgery was over (it only took 2 hours instead of his projected 2.5-3+ hours), he came out to talk to us. He had a big smile on his face....always nice to see from a surgeon! He said we got the best of both worlds. He was able to make a small (about one inch) incision to access the gut, avoiding the intestines almost completely, and place the G tube without any trouble. We were all so relieved it worked out that way! He felt confident that Summer could recover nicely since he didn't have to disturb the intestines...phew!

Summer has been doing fairly well. The first day/night she was in a lot of pain. Her heart rate was fluctuating and even got as high as 200 at a couple of points...normal shoud be about 120. She was also very swollen and red and very sensitive. They gave her Tylenol and Morphine for the pain, but the Morphine made her very jumpy and jittery. She also ran a low grade fever most of the day and so they were concerned she may be developing an infection.

This morning her fever was gone and as the day went on, she didn't need Morphine. The swelling started going down, and she has now pooped 4 times! Yippee...what a fun thing to celebrate ;) For her, it is the best thing ever! The first time she went, she was acting like she was in pain, then had some very loud, loaded gas...then, smiled and laughed! It was so funny...she was definitely telling us she was feeling better. :)

They started her feeds this morning, via her G tube, at 20 ML's per hour and have increased it by 20 ML's every 3 hours. She just got turned up to 100 ML's and will be increased to 105 (what she came in at) very shortly. As long as all continues to go well with her feeds, she will be discharged tomorrow :) That is, of course, after I get my free parent massage, haha!

So, to explain the renaming of her blog...while we have been here, we have heard the same things for the last two days from docs and nurses....

No one thought Summer would make it this far. The entire surgical team is amazed with her progress...the resident that did rounds tonight said when he was talking about her during their briefing, they all did a double take and said "you're kidding me! Summer Cameron? But, she was left with only 10% of her bowel! ...and she is tollerating full feeds? ....and just had a G tube put in??" Our nurses have all been very surprised too. One of them said it is unheard of for a baby like Summer, with only 10% left, to be getting a G tube, tollerating her feeds (most kids like her can only make it to 20-30 ML's per hour, she is at 105!), and be off TPN! Everyone is thrilled to see her....they told me she is definitely the exception to the rule, as all the other short gut kids like her are very sick. Summer's bum is still crystal clear....that is something that is unusual too...most short gut kids have nasty rashes all the time, like she used too. Everyone keeps congratulating me and commending me on a job well done....I say, Good job Summer! Way to prove them all wrong!

So, in lew of the legendary status my little person is obviously gaining, I am giving her the title " The Short Gut Wonder"....defying odds whenever she can :) She deserves applause! And, I have a feeling this little girl is going to be very spoiled....well, she deserves it! :)

The night before surgery...Broviac still in....

Giving mom "5"...the last time we had to flush her line! Sorry Summer, no moe saline flush syringes to play with!

Summer's TPN tray....soon to be retired....now we're making COOKIES!

Daddy cuddles after surgery. Whenever Tom and I are both here, she picks him to comfort her....I think he likes it :)

While I was uploading the photos to this post, Summer was watching me...she saw this photo and started chanting "Da, da....da, da"....she usually says it with a whisper...too cute.

Daddy cuddles with his movie player...always in tow :)

Summer starting to open her eyes, but not feeling quite herself yet

Later, after Tom left, Summer stared having moments of happy smiles...she even posed for me with her doctor bunny she got for Christmas

Happy girl

This afternoon she was feeling even better...her shiny disposistion is slowly creeping back...
She even said a few new words today....the nurse asked her to give her "5"...Summer said "Fye" and gave her 5 :) She was crying a little when the nurses came near her and she said "My momma"....it melted my heart! :)

I think I might have to take more photos than usual now that every day is a "no tape" day!

Some "after" shots...this is the G tube...it looks like an inflatable ball plug. this tube is to vent the after surgery gas....

The feeding tube plugged in...her new attachment...but we can hide it now! Goodbye nosey strangers! (I hope)

Summer this evening after a few poops....she is feeling so much better! She loves her "ba ba" (baby doll)

Have a good sleep....for tomorrow we may go home!

Movin' and a Shakin'

2010-01-19T19:53:00.000-08:00

Look at her go!

Wow! Something finally clicked and Summer is moving :) She has been rolling over from her back to her stomach for a long time, but it has been with a lot of effort and thought. Then, when she would get to her tummy, she would get frustrated and cry. Today she had a therapy session (this time at the therapy center instead of the therapist coming to our house as usual), and it made a huge difference! Summer has been crying whenever the therapist has come to work her at our house....at least the last 4 or 5 times. We decided at the last session we would try working her at the center with all their equipment. Well, it seemed to work :) Summer babbled and talked and started flipping from back to stomach and vise versa with little to no effort. She has been extremely happy (even happier than her usual ridiculously happy mode) with herself today :) She's been rolling around with glee :) Even finding little bits on the carpet to investigate....ah, the fun begins! YAY!

This last weekend, I took her with me on a trip to the ocean with my girlfriends. Summer was great, as usual, but had a lot of acid reflux and was throwing up almost the whole time. We went to the doctor today and he increased her acid reducers to help. In just 2 days, Summer will have her G tube put in and her IV removed! The IV has been a long time coming :) :) :)....and the G tube will be so much better for her. I'm hoping that it really does make a big difference with her acid reflux and over all eating ability...her gag reflex is sometimes very sensitive :( In fact, this weekend when I attempted to feed her, it just took me touching her lips with the spoon containing a small drop of food to get her to throw up.....I'm hoping that goes away!

Cross your fingers, say prayers, send positive thoughts.....surgery is this Thurs. Jan 21st :)

Summer loves her aunt Debbie :)

Mom and Summer on the beach at Ocean Shores, WA...it was windy...Summer loved it....she would put her face to the wind and grin!

Summer's quilt! My friend Yvonne put the top together for me while I was on bed rest....

19 months later it's done! Phew :)

What a goofy look!!

Summer caught red handed...she was hanging out on the bed with the girls and attacked Angie's feet....hehehehehe :)

Celebration time!

2010-01-05T22:21:00.000-08:00

IT'S OFFICIAL!

SUMMER IS NOW OFF TPN PERMANENTLY.....THE BROVIAC (IV) COMES OUT JANUARY 21st!

We are so excited for this HUGE milestone to be met. Even today in clinic, the nutritionist told me she has often wondered if Summer would always need a little TPN to keep her going, but NO! She is also surprised by how fast they were able to get her off it....of course, 15 monts of it at home, has seemed like an eternity to us! Summer has been off the TPN now for 4 weeks and has held steady with her blood sugar and other body chemistry levels to take it away for good :) Today she weighed in just 10 grams more that 2 weeks ago, but the Doc. wasn't worried....she has some good reserve and has always moved forward in her growth.

So, in just 2 1/2 weeks, our daughter will have one less tube...no more worry of a blood infection, her pulling it out, no more huge medical supply deliveries, IV care......one, BIG, less thing to do and worry about.

WOOOOOOOOOOOHOOOOOOOOOOOOOOOO!!!!!!!!!!!!!!

Bath tubs, swimming pools and hot tubs, here she comes!

Surgery #8 coming up!

2009-12-30T20:34:00.000-08:00

Today we met with a surgeon to discuss placing a G (feeding) tube in Summer's stomach. She has had the NG (nose noodle) now for a LONG time, so they feel it would be best to install the G tube for her feeds. Summer is getting a little more mobile (she has been rolling over more often), her face is getting more sensitive to the tape, there is a chance of her pulling the tube out half way while she is sleeping and could aspirate, the tube is down her throat and could be affecting her ability to learn to swallow, putting the tube back in is getting more traumatic for her (and me), and many more. She has been running 100 ML's per hour 24/7 for a few weeks now and is doing great! However, she is no where near where she needs to be to not have some kind of feeding tube, so it's back to the OR to install it.

A couple of weeks ago, Summer had a CT on her belly and they discovered her stomach is hiding behind her intestines (maybe it wanted a better view of the food heading out?)....things shift around when the operate on the insides....so surgery would be necessary to place the tube. Sometimes they can put the G tube in with a scope that goes down the throat, but of course, in an effort to be "different", Summer can't go the easy route! The G tube will be a "button" that is flush with her belly....it looks like a plug for something inflatable, hmm, hope nobody mistakes her for a cute parade balloon! We will open the flap, insert the tube, then start the feeds. I have heard it is very easy to use and is not as invasive as the NG tube is....we'll hope for that!

We also discussed her Broviac IV removal. Summer has been off TPN now for 3 weeks and as of last week, she was holding steady. Her blood sugar is normal, she had gained 10 grams per day (the goal was 4-10 grams per day) and her liver function made a huge jump in the positive direction. We check in next week (Jan. 5) with the GI doc and nutritionist, and as long as she is still looking this good, they will give the OK to pull the IV out permanently!!!

The surgeon told me that if given the OK to pull the IV out, he will do it when she goes in to have the G tube installed :) This is great news....we thought she was going to have to have 2 separate surgeries for these 2 procedures :) He also said that, when she is ready to be done with the G tube (he is predicting many months), that the site will likely need to be closed surgically. He suggested that he could fix the gaping hole they left in her chest from the first IV that was removed. And, if he can use the current incision site on her abdomen for the G tube surgery, he will try and clean up the scar, which is pretty gnarly.....hmmmm, maybe we should pass or she might decide to wear a bikini someday....sorry, hubby...these surgeries could have a little plastic surgery bonus on the side....without the bill later for a vain teenager, ha ha!

The surgeon is one who is very familiar with Summer, and remembered details about her previous surgeries from over a year ago. He was very impressed with the progress she has made and was VERY happy for us that she could have the IV taken out soon. He said that none of the surgical team would have predicted she would do so well and look as great as she does now! It's so nice to be able to say....PPPPPLLLLBLBBBBB! Neeener, neeener, neeeener! Thank you prayer :) Way to prove them wrong Summer! :) :) :)

HAPPY NEW YEAR!! Looks like we are starting ours off right!

Life changing news :)

2009-12-10T00:21:00.000-08:00

So, here is the official scoop.....

Yesterday at GI clinic, Summer weighed in at 20 lbs. 5 ounces! In two weeks she gained 5 ounces :) She has been on 95 ML's per hour for a week now and tolerating it just fine...her labs all looked great. So, with the formula goal met and the nice weight gain......we got an early Christmas present....

No more TPN!!!!!!

I was sort of expecting to hear this, but didn't believe it could really be so.....well, it is. The medical team in the room were all smiling from ear to ear.....I was in shock.

For now, we will not give her any TPN in her IV, but still maintain it for another 4 weeks when they will make the final determination whether to take out her broviac line permanently or not. Summer will have her first check-in in two weeks....then Jan. 5 will be the appt. to decide if it stays or goes for good!

I don't know if anyone REALLY knows how BIG a deal this is for our daughter. This is the baby, who was left with only 10% of her bowel, so we were told she would likely be IV dependant for the rest of her life....which meant, a much shorter life for her. If she were to be on TPN always, it would cause liver damage, which would lead to liver failure, and more than likely also a bowel transplant. With these factors in play, her life expentancy was only 3-4 years old. When I was told this, I immediately starting thinking about all the things she would miss out on.....it was devistating news.

Well, in the words of a good friend of mine, NEENER, NEENER, NEEENER!!!

Summer is now 17 months old, and if all goes as planned, she will have the IV removed when she is just 18 months old :) I was told a little while ago, by a fellow Children's hospital mom, that these kids don't follow the "rule" book....they don't know they aren't supposed to defy odds and do things the docs think they can't! Yay Summer!!! I am so happy she drums to her own beat :) Let's just hope this strength doesn't come back to bite us when she is a teenager! haha!

Merry Christmas and Hap, hap, happy New Year to us!!!

We also discussed her feeding tube. She currently has an NG tube (ye ol' nose noodle). We had discussed the possibility of installing a G tube (a "button" is installed in the stomach and the tube is inserted through the port there) a few months ago, but decided against it because of the disruption to her gut it would cause. The doc thought she might progress a little quicker with her oral feedings, so we were hanging on to the nose noodle. Summer isn't very far in her oral feedings at the moment, so she is still going to be dependant on the tube feedings. They want her to have the G tube put in. This can be either surgical, or non surgical, depending on the state of her gut. She will be getting a belly CT done soon to take a look and see which option is better for the line placement. Removing the NG tube will decrease her acid reflux, help out learning the eating/swallowing process (removing the tube from the back of her throat), and help with her face. Anytime I have had to remove the tape, or it has been ripped off, her face breaks out for about a week....she has lived her entire life with tape on her face! I have to admit it will be nice to see my daughter's cute cheeks without tape all the time! Summer is also starting to roll more frequently and has tangled her neck up in her feeding tube.....all around, sounds like the G tube will be a good option. The procedure will require an over-night stay at Children's, so we are going to schedule it for Jan.

So, keep the prayers coming......it's obviously helped so far! Thanks for all your support :) It's nice to know we have a cheering section!

She made it!

2009-12-03T09:06:00.000-08:00

I just turned Summer's formula tube feeds up to 95 ML's per hour!!!!! I can't believe it happened (finally)...she is at her formula intake goal....every time she has gained weight or grown, the goal has been increased, sending it further and further out of reach, Summer finally caught up!...next step, drop the TPN :) Summer has been tolerating the formula increases (only 5 ML's every 4 weeks, though she was only on 90 for a week, before I bumped her up last night to 95, he he). She gained 4 grams per day as of last week's check-up and her nutritionist said if she was doing well, I could turn it up this week, so I did :) She has a clinic appt. next Tues., so if all goes well (keep your fingers crossed, prayers coming, rub those rabbit feet), we will reduce the TPN down even further.

I talked to one of the home care pharmacists yesterday...she called to tell me how excited she was that Summer is so close to dropping TPN. I asked her how fast weening usual goes once the formula goal is met...she said sometimes, if the labs are good, and the baby is very stable, they will just take the TPN away...no need to taper off! She did say, of course, this may not be the case for Summer, but I sure hope it is!

Wow, what a great Christmas present this would be!!!!

Latest (AND GREATEST) News! :)

2009-11-29T22:28:00.000-08:00

This was so cute, I couldn't resist :)

Last week Summer had an appt. with the nutritionist in the GI clinic. She woke up that morning throwing up, so I was worried what the outcome would be. Lately, and always the day after she has skipped TPN overnight, she has had a day here and there where she throws up quite a bit. She was going in for a weight check, so didn't think the barfing would help...turns out, the throwing up is due to the lack of acid reducers running through her system, so we are giving them to her daily now...small price to pay :)

Fortunately, Summer still gained enough weight to make the nutritionist happy! She now weighs 20 lbs. 3 oz. :) This was a weight gain of 4 grams per day over a 2 week period. Since she performed as they were hoping, the nutritionist ok'd dropping the TPN to only 4 days per week! This, of course, means only 4-12 hour sessions :) She also ok'd a formula increase to 90 ML's per hour (Still 24/7)...this is only 5 ML's from her goal now! Wooo hooo! By this coming Wed., as long as Summer is still tolerating her formula at that rate, we will increase it to 95 ML's and run it for a week until her next clinic visit. The nutritionist was very happy with Summer's progress....as we are too, of course! She was pleased that this process has gone quickly, and has been fairly set-back free :)

I can't believe we are so close to chucking the IV....can't wait too!

Sleepy girl...she pulled out her tube...I pulled out the camera :)

Summer is very ticklish...she has the best giggle!

Shopping the Black friday ads is hard work!

Since her surgery, Summer's eyes have gotten straighter every day...she looks great :)

These socks have fit her since she was newborn...we are almost ready to retire them.

I love her cheeks :)

Summer on Thanksgiving day...my hubby hates the "Whoo" hairdoo...I love it :)

Caught in the act of playing with her food....good job Summer! As part of the feeding therapy (to teach her how to eat solids), we are to let her discover and play with her food. She seemed to really love that idea with these mashed potatoes...

Yummy Thanksgiving dinner!

Eye surgery and MRI Nov. 9, 2009

2009-11-17T21:33:00.000-08:00

Last Monday Summer had eye surgery to correct her loose muscles in both eyes. We have been patching her eye for a few months and it hasn't helped. I have to admit though, I didn't get the patch on as much as I was supposed to...with all that goes on around here, when I would finally get a round to it, she would be fast asleep for the night. Enough guilty mom confessions....

Monday morning we got up bright and early....5 AM! Groan..... For those who know what night owl I am, this was no easy task. However, when I have to, I can rise to the occasion ( haha...even with the crow). We headed to Children's for a 7:30 AM check-in time. We got all checked in and waited to be called back. Before they would operate on her eyes, she was to have an MRI on her brain.

At a visit last month to Neurodevelopment, her RN ordered the MRI to see if they could get a better "picture" of what may be going on....why Summer's motor skills are still so far behind. She was assuming that Summer may have some scarring in the motor function area of her brain from an injury that occured while she was still very tiny and new...something a lot of very premature babies experience. I was more nervous for this than the surgery....anytime they have to look at her brain, it makes me nervous. Last year in two CT scans, they found some swelling in a few of the ventricles...it was not a concern, so they haven't followed up with any tests. Summer has been progressing, slowly, but surely, but she is still not as far along as they would like to see, so the RN wanted an MRI done. Summer would need to be sedated for the MRI, so it was a convenient time to do it now.

They took us to the MRI room and explained what would happen when they gave her the medication to put her to sleep. They were going to have me hold her....she would go limp from the drug and then we would lay her down and give her oxygen. At the time, I thought that I could do this.....fortuneatly, as they were setting up, the MRI machine broke and I didn't have to see her go to sleep. Talking to Tom later, I realized the potentially tramatic affect this may have had....since I held Brooke as she passed away....this would have been way too close to home! Thank you to whoever broke the machine!!

So, while they waited for a technician to come fix the problem, they sent us into a waiting room...about 15 minutes later, they came in and said they would go ahead with the eye surgery first and hopefully the machine would be up and running when she was done.

Here are a few "before" shots of our cute little cross-eyed girl :)

They gave her a beanie baby bear to take in to surgery with her

She tried to watch a little tv while we waited

I walked with Summer down the hall and kissed her goodbye at the surgery center entrance....

Shortly after I got to the waiting room, my hubby called and said he was on his way to meet me. Right as I hung up with him, the pager went off calling us back to talk to the surgeon. Dr. Baran told us the surgery went well and Summer did fine....she was in getting her MRI and we were to wait some more. About an hour later, they called us back to wait for Summer. She was wheeled in to us in a hospital crib all wrapped up in warm blankets...all we could see was her face. She heard us talk and opened her very red eyes. She looked terrible...it was heartbreaking :(

Summer was still very groggy from the anesthesia and I'm sure her eyes hurt. She whined a bit, then realized Tom was there....she is a daddy's girl! She was very happy to cuddle with daddy and even cracked some smiles....

Ouch, but still happy...

...for a minute...

After she had enough daddy, she wanted mommy....she was starting to wake up a little more....

When it was time to get her dressed to go home, back to daddy she went...isn't it great having choices?

We got her dressed and they gave us some "elbow no-nos"...baby straight jacket, to keep her from rubbing her eyes too much. This first pair was a little too big....Summer thought it was hilarious :)

Time to go home...by now, Summer was getting back to her old self, even though she couldn't bend her elbows! Silly, happy, girl :)

They told us the results of the MRI would be ready by the next day. We had GI clinic, so I was hoping our doc would give them to us there. We went to clinic and it was not our regular doc...she printed out the report for us, but wasn't able to explain it to me. I tried to wait to talk to our neurodevelopment nurse, and not to read it, but of course my curiosity got the better of me, and I did. It sounded awful. It was described that Summer has extensive thinning of the white matter and corpus collosum. She also has swollen ventricles, and another part of her brain is enlarged (these were all noted in her previous CT and they are not sure if they will affect her at this point). Of course I went straight to the internet, big mistake! I tried not to worry, haha, but had a hard time sleeping or thinking of anything else until two days later when I got a call from neuro.

Apparently the thinning white matter is exactly what she was assuming they would find...it is just a fancy way of saying scar tissue. Summer's brain was damaged when she got NEC at 2 weeks old, which resulted in her short bowel syndrome, surgeries, etc. NEC can contribute to trama to the brain just as much as being born premature can. The corpus collosum is the center white matter that connects the two hemispheres together. It is the pathway to get both sides to communite and cooperate together. Having damage in this area will result in motor delays. At this point, they aren'e able to make any predictions...they can better asses her in one year, when she is 2 years corrected age. This could end up being a severe problem, or she could just be a little uncoordinated....time will tell. Sigh.... More waiting is NOT what I wanted to do, but that is what we have to do with her.

At this point, the nurse did remind me, she was encouraged by Summer's progress in a 3 month period. From the report she had reviewed, then seeing Summer in clinic last month, Summer had made much more progress than she had expected she would. Summer is still moving forward, though slowly, but she is moving forward.

Tomorrow she has an evaluation with an OT/PT/feeding therapist at Children's...they will test her abilities and give us a better idea where she is, and give some ideas for therapy we can do with her at home. We are also going to start her on feeding therapy since she is so close to having her IV removed! This leads us onto a little more positive note...

Summer has done so well, and her bum is still rash free, we got to turn up her formula again. We are still running TPN (IV) 5 days per week, but the nutritionist wants to see Summer in 2 weeks (from the clinic appt last week), and will drop down to 4 days a week if Summer is still gaining weight and looking good :) She is now at 85 ML's per hour....and can increase to 90 after this appt. too. Her goal per hour is only95 ML's per hour! We are SO close to getting rid of the IV....I can't wait :)

Summer's eyes look better each day....we went to a post-op appt. last Friday. Though her eyes are remarkably straighter, the surgeon was not happy with their allignment. Her left eye goes outward now...she wants us to come back in two weeks to asses how she is doing at that point. Summer may have to have the surgery again to bring the eye back in....we have to wait and see what happens....for now, look how cute she looks :)

3 days after surgery...

6 days after surgery

Sitting up with a little help from mom...she looks like a different baby :)

The happiest place on earth...really :)

2009-11-02T22:48:00.000-08:00

Nothing but fun lately! That is soon going to change....tomorrow we have a pre-op appt. for Summer's upcoming eye surgery and MRI on Nov.9th...clinic the day after, then an evaluation with OT/PT/feeding therapy the following week.

Last week, however, it was nothing but smiles :) I was invited to a reunion with my Fetal Surgeon in LA. I was excited to go and wanted to have company with me...my friend Celia from Utah decided she needed a break from her 5 kids, so she flew there to meet me! :) Unfortunately, a few days before the reunion, they called and cancelled it due to the H1N1 flu scare. I had already bought my ticket, discount Disney tickets, and Medieval Times tickets....needless to say, Summer and I were on our way to sunny California anyway!

We spent 2 days at Disneyland/Ca Adventure and loved every minute of it! Summer loved it too :) I had no idea how many rides she would get to go on with me, so we were pleasantly surprised...we even got a "Fast Pass" to the front of the lines since Summer's stroller acts as a wheelchair (to carry her equipment). It was so much fun riding the rides without standing in line for very long...we got to see more that way :) The rides Summer couldn't ride on, Celia and I did a kid swap...waited in line, then traded off who rode the ride. Summer was so cute...she was just taking it all in...

Athough the reunion was cancelled with Dr. Chmait and Terri (his nurse), I arranged to still go visit them. It was great to see this incredible medical team again...and for Summer to meet them! They loved her :) We took lots of pictures (of course), and shared some laughs...they are re-scheduling the reunion after flu season next spring, hopefully we can make it back :)

Dr. RAmen Chmait, Summer, me, Terri Maitino, RN

Summer took to Dr. Chmait right away :)

Summer did a little reading in the waiting room...

Give him 5! He's why you are here! :)

Summer approves of Dr. Chmait...

Good friends :)

We're on our way to Disneyland!

Waiting for the tram to the park

Summer helped hold the stroller on her lap in the tram

Summer loved the submarine ride...newly converted to a "Finding Nemo" theme...she was so cute
Stopping for gas at Goofy's garage

Summer loved the "It's a small world" ride....we think it may have brain washed her...maybe us too!

Where's Summer in this sea of strollers???

Blasting Zurg in the Buzz Lightyear ride

Despite the loudest set of speakers ever at Medieval Times, Summer slept through the whole thing!

Me, Summer, and Celia...Disneland was decorated for Halloween :)

Where to next?

Cool confetti after the parade came through

Summer LOVED the carousel at CA Adventure....

She was NOT happy when we took her off!

On the way to the airport...she has forgiven us now for taking her off the fun rides :)

Watching CA fade away....

Sleepy baby=happy baby :)

Just for fun....she checked out the seat next to me on the way home...

Summer did great on the plane! I even hooked her TPN up in the airplane bathroom on the way to CA! Summer thought it was great fun :)

As you can see, we did NOT forget anything! I was a regular pack mule...soliciting sympathy from many, haha :) Thank goodness for wheels!

Recent news on the medical front...

2009-10-18T02:04:00.000-07:00

This last Tues. was Summer's GI clinic visit (now every 4 weeks), and a check up with the neurodevelopment clinic.

First we went to neuro...the nurse practitioner we usually see is no longer with the team, so we saw someone new...she was very thorough. She told me after reading the notes from the previous nurse, she expected to see a baby who was much worse off developmentally, than Summer is. She explained that the notes indicated a concern for Summer's progress being so delayed....this perplexed me a bit. I had been told each time we went in that she was doing fine and they weren't concerned with her progress as long as she was moving forward. The new nurse said she was only at about a 3-4 month level, in her motor skills, in July (when she was one). Now, she has made so much progress (about 5 months worth in 3 months), that she is about a 8-9 month old developmentally. We discussed options to try and maximize her potential...we are going to have her evaluated with an occupational/physical therapist again at Children's to make sure there isn't anything we are not doing for her to progress better. We also talked about her ability to eat solids...this is a struggle for me with 3 other kids and a busy schedule...it is hard to remember to feed a baby that isn't hungry. We are going to see a feeding therapist to help with this :) It will be exciting to be able to get her take things by mouth better than she does...we'll see what happens.

The nurse also thinks getting an MRI of Summer's brain is a good idea. She isn't overly concerned about it, but feels it is good timing at the moment. Summer is scheduled for her eye surgery on Nov. 9th and will be sedated...the MRI requires this, so they want to take advantage of the timing. Summer has had a couple of Cat scans, one which showed many areas of concern, then a follow up that showed large areas of improvement...the MRI will give us a better "picture" of what may be going on. She feels that maybe there is some scar tissue on the part of the brain that controls motor function....sigh.... There is no way to tell what outcome we will have....we just have to wait and see how she does. She said it could mean something small, or big...maybe a slight learning disability, or maybe she won't be the most coordinated child. So, we will get the MRI and go from there....

Socially and mentally, as far as we can tell, Summer is doing great! Her language is developing nicely and she has shown definite preferences with mom/dad, brothers, and toys. She also exhibits jealousy sometimes when Morgan climbs up on my hubby's lap :) These are all good signs in this department :)

Our next appt. was with GI. Summer has made HUGE progress here! Ever since she had her broviac replaced (about 7 weeks ago) her bum has been clear! This, though it may sound trivial or odd, is no small feat. Since Summer has such loose stools, her bum is in an almost constant state of rash....bumpy, bleeding, painful...not anymore! The nutritionist couldn't believe it was the same bum :) Bum transplant! I often think it is hilarious when we are in a room with 4 grown people discussing how cute or clear my baby's bum is...anyone who is part of the GI world understands...that is what life revolves around!

Summer's lab work still looks fantastic! Her liver function is excellent and all other body chemistry they follow, is looking good :) I had increased her formula, in her NG, by 10 ML's during the last 4 weeks and Summer did great....she gained 12 ounces, making her now 20 lbs. 4 oz....and grew 3 CM! This, of course, was good news too :) We got to turn up her formula another 5 ML's...she is now at 75 ML's per hour...her new goal to be free of TPN is 95 ML's per hour :) getting closer! Even better news......THEY DROPPED 2 DAYS A WEEK OFF THE TPN/IV SCHEDULE! This is the best news so far....it is getting us closer to getting rid of her dependence on the supplemental nutrition....and taking out the IV! WOOHOO! I was not expecting this change, so to say I was thrilled, would be an understatement :)

We have another appt. in 4 weeks...the day after her eye surgery and MRI, on Nov. 10. For the next couple of weeks, we will hope for good growth, a clear bum, and tolerance of the lack of TPN those two days....

Another surgery!

2009-10-07T09:07:00.001-07:00

Sad Summer...cute pouty lip :)

This is the cutest cross-eyed baby ever! She gets excited or sleepy and her eyes roll around in her head...so funny. But, not so funny. We went to an Opthomology check up yesterday and her eyes are not improving with the patching we are doing, so they want to correct them surgically. We have been watching her vision for the past few months and it has been fine so far. However, the right eye, which is the one that crosses in the most, is not as strong as the left. In order to keep her eyes progressing with good vision, the issue needs to be repaired. Generally the doc tries to avoid surgery with glasses and patching, but in Summer's case, she doesn't need corrective lenses, so the glasses wouldn't help.

So, back to the OR we go! They will make a couple of stitches to tack the muscle down and straighten out the eyes...it is a day surgery procedure, but still requires anesthesia....sigh. The surgery will be in the next month or so...I am just waiting for a scheduler to call me.

Can we ever have too many pictures? I think not! ;)

Happy baby...

My hungry little caterpillar

2009-10-05T13:37:00.000-07:00

Saturday night we took the kids out to dinner and to the bookstore...Tom and Andrew both had gift cards from last Christmas they hadn't spent, so it was about time we used them :)

Little Tom chose a "Calvin and Hobbes" Treasury, Andrew picked 2 "Pokemon" chapter comic books, Morgan picked out a "My Little Pony" puzzle book and Summer picked out this, "The Very Hungry Caterpillar" stuffed toy. While we were looking around, I handed it to her...I thought it was cute...and she got very attached to it right away. When we were about to leave, my hubby took it from her...she obviously didn't want us to take it, so we gave it back. He tried it once more and she wrenched her neck around looking for it, whined, and jabbered some lecture toned sound....she squeeled and had a huge smile on her face when he handed it back to her....so, of course we caved, and bought it for her :)

That night at home, Summer was playing with the caterpillar...I took off the now very soggy tag and read it. Without knowing it, we chose a toy that was a very appropriate symbol for our little girl....

Eric Carle's, "The Very Hungry Caterpillar" is celebrating the 40th anniversary of the book, so the author wrote a special note for the tag...it reads:

A message from Eric Carle:

"The Very Hungry Caterpillar"

is about hope. You, like the

little caterpillar, will grow up,

unfold your wings and fly off

into the future.

This little caterpillar of ours has certainly beat a lot of odds...she is on her way to becoming a butterfly :)
....and, to boot, she has matching PJ's :)

Summer has something to say...

2009-10-02T13:30:00.000-07:00

Babies have the best expressions....Summer was kind enough to give us a little sample of almost all of hers in one video clip! So cute!

Progress at the moment:

Summer has successfully handled the formula increase so far :) Last week I discovered another tooth...on top in the front...when she bit my finger, ouch :) Next Tues. we go in for an eye check-up...(her right eye is still having muscle control issues)....then the following Tues. is GI clinic and a check up with the Neurodevelopment clinic. Life if busy for her, as usual, and she is just as happy as ever!

Can I dial with my nose??

Little feet...getting bigger!

Squeeky wheel gets the grease...or the formula in this case :)

2009-09-29T21:27:00.001-07:00

Two weeks ago at clinic we decided to increase Summer's formula to 65 ML's per hour. I asked the doc to tell me how much more we needed in order for her IV to no longer be needed? He said if we could get to 85-90 ML's per hour at her current weight and condition, the need for the extra nutrients from the TPN/IV would be gone! Of course, being the scheming type of person that I am (only good schemes usually involving some sort of vacation my hubby doesn't want to take, haha), I started planning out in my mind how to get this accomplished ASAP.

I jokingly told the nutritionist that in two weeks I would call her and get permission to increase Summer's formula again.....she chuckled and said "we'll see about that". Well, today marked two weeks....I actually called yesterday. Summer's bum, which is usually very red, blistered and rashy, (from the liquid diet and the usually constant diarhea) has been crystal clear for over 2 1/2 weeks now! This is a new record for her :) One of the big signs of her body not tollerating the amount of formula we give her is the rashes and/or skin breakdown from the loose stools. I figured it was safe to ask, so I did....they said, YES :) I turned her formula up to 70 ML's per hour and she seems to be doing just fine :) In fact, in the past few weeks, she has gone for 5-6 hours during the day without any stools....again, a record....she used to poop at least 10-12 times daily!

To sum up, she is at 70 ML's per hour and needs to get to 85-90....we have clinic in 2 weeks where we can hopefully up it another 5 ML's, making it 75...then 2 weeks later, another 5, and 2 weeks after that, another 5, making 85.....this is my plan....hopefully Summer's bum cooperates :)

I can't wait to get that IV out of her body.....I feel sad every time I see her belly and chest with all the scars....my hubby just reminds me it is better to have the scars than to not have her! Amen! :)

Cute bath baby... my sister found this tub for Summer...perfect for the non-water-proof baby :)

Here's a recent photo shoot....I took Senior pictures for 2 friends' daughters last week and stuck some in for Summer too :) They were taken at Bellevue Botanical Gardens.

Look what I found in the garden! These definitely need fairy wings :)

BreAnna took a break from smiling and hoisted Summer up in the flowers :)

Thanks to Hannah standing behind the camera for this one :)

Frogs, always a must :)

Put down the camera and get me outta here!

2009-09-24T01:44:00.000-07:00

While we were eating dinner tonight, Summer was hanging out on the couch. At one point, Morgan ran over to tell me (in cave man) the the thing Summer was on was "slidin' down". Soon after that, Summer started whining....we went to check it out and found this. Of course, being the kind of mother that I am, I grabbed my camera, then pulled her out :) Are you surprised?

Reflection

2009-09-19T00:28:00.000-07:00

Summer the day after the new line was put in. The old site, in the middle of her chest, will heal eventually.

Summer is now 14 months old! We have had a few things happen these last few weeks that have gotten me to reflect on our experiences with her.

Last week, as you know, we had to admit her to Seattle Children's a couple of times to get her Broviac IV line replaced. While staying in the hospital with her, I walked past the NICU several times, down the same halls I paced while going through the grief of losing Summer's twin, Brooke, and then waiting to hear the fate of our tiny Summer just 5 days after Brooke's passing. My husband, my sister, and I all sat in the waiting area while Summer was in surgery for the first time...he outcome was so uncertain. Summer's intestines had been seriously infected by NEC and they expected to remove portions of it. After some time, the surgeon came out to talk to us. It was about 2 AM and we had been so stressed with worry...the news he brought did not lift our spirits in the least. He explained that he was still in the middle of the surgery, but wanted to let us know what was happening. They were to remove most of Summer's intestines and were leaving a good portion that was infected in for 48 hours to see if it could recover and be saved. He then told us she was going to end up with Short Bowel syndrome, more than likely be on an IV for the rest of her life, which could end up only being 3-4 years if we were lucky, due to liver failure as a result of the TPN/IV use constantly running straight through the liver and resulting in liver failure, then death. He then asked us what we wanted him to do. Save her! So, he returned to the surgery, and we got to see her shortly afterward.

The next 48 hours were very stressful. The 2nd surgery revealed that the pieces of intestine they hoped would recover, didn't, and had to be removed. Summer was left with only 10% of her bowel....pretty grim outcome we had hoped to avoid. The only thing we could do from then on was to "wait and see". No one really knew how she would do....

The last 14 months have shown us how much of a miracle out little girl really is. Not only is she thriving, but she is beating the odds and proving the doctors wrong.

This doll is about the size Summer was when she was born!

We had our monthly clinic visit a few days ago and the news was great! Summer has been weaned down to only 12 hours on her IV running TPN, which accounts for about 28% of her needed caloric intake for each day. She has grown very well, her labs are continuing to improve, and she is progressing forward in all respects. We were told to increase her NG tube feeds to 65 ML's per hour (which still runs 24/7) and then the TPN volume would be reduced as well. I'm guessing we are down to about 25% of calories now from TPN. I was happy about this and asked them if they had an idea when we could just get rid of the IV all together. She just had the line replaced after having it for almost a year with no infection, and I would love to just get rid of this new one before we ruin that track record!

Her doc said if all goes well, like it has, and there are no significant changes in her weight, or condition, we could possibly have the IV removed when she reached 85-90 ML's per hour. That is only 20-25 ML's per hour more! We have currently been increasing the feeds by 5 ML's about every month, so that means we could reach the goal in 4-6 months, I'm guessing :) This is so incredible...we can actually see a possible end in sight! When the IV is removed, Summer's care will be cut down drastically....our lives could be that much more normal!

With this news, I was reminded of the surgeon's predictions....HA!!, way to go Summer, you prove them wrong! :)

I have also been thinking a lot about all the many talented people who have played such a major role in keeping my daughter going. The very first doc to save her life, and the main reason she was even given a chance to survive, is Dr. Ramen Chmait at UCLA/Hollywood Presbyterian. At 17 weeks pregnant, we flew to LA for emergency laser surgery to treat Twin to twin transfusion, that Summer and her twin sister, Brooke were experiencing. Summer and Brooke got here together....they carried each other through to birth, and they were given this fighting chance because of this amazing surgery performed by an incredibly humble and compassionate doctor and nurse. I have joined a group on Facebook for Dr. Chmait and just discovered a video link to a news story that featured him and had clips from a laser surgery performed on identical twin girls. I loved watching him in action and remembered a lot about my own experience when I watched it. It is really interesting and quite the tear jerker (for me at least )...definitely worth watching. Here's a link
http://www.maternal-fetalhealth.org/fetal-therapy/fetal-conditions-treated/twin-twin-transfusion-syndrome/

I've also posted it on my sidebar with a cool pic of Summer's hand as seen from inside the womb :) Dr. Chmait is having a patient reunion next month...I'm trying to figure out how to get myself there, but not sure we can spend the money at the moment..... :(

For now, I am so happy with our little girl, who she is, who she will have the chance to become...

Hang loose :)

Summer's one of the girls...Morgan, Summer, and Sadie

Wow! Look at that doo!

I think I might see some curls coming in :)

The new Broviac (IV line)

2009-09-12T12:47:00.000-07:00

Summer's surgery went without a hitch this morning. They came and got her at 9 AM and she was back in her room by 11:30. The surgeon tried to thread the new line through the old vein, but was unable to get the wire (that would hold it open) to make it through. The new licne is in a new vein, which means another small scar on her neck, and comes out just over her left chest muscle. This means we added 2 new scars to her count...making a total of 7. The good thing about the scars though, is that they will dissipate as she grows...most of them will be almost unnoticeable :)

We will take her home tonight after a few hours of monitoring by the nurses, we start up her feeds, and the Huskie's game traffic is gone...when there is a game, since we have to drive around Lk. Washington in front of the stadium to get to the freeways, they block off roads and it can take an hour just to go through 3 or 4 traffic lights! I got stuck in this traffic once...not pretty!

We will go home to a quiet house (always my wish, never granted!) since my other 3 kids will be at my sis-in-law's house for the night :) So glad this finally got taken care of...and it went well :)

There's a hole in thy bucket, dear Summer

2009-09-12T00:33:00.000-07:00

Summer's IV has been repaired 2 times so in the last 10 months and is now leaking. About 2-3 weeks ago, we noticed the bio patch (the blue circular patch under the tape at the line site), was looking a little strange. A couple of days after we put a new one one, the blue liner on the itop of the foam started separating, sending the foam to wander around her chest. This patch if full of a special chemical that prevents germs from entering the line site in her chest for 7 days. We typically only change it out every week...we have had to change it out every couple of days since it was coming apart. At first we thought maybe the bio patch was defective, so we switched to a different batch number. Then we thought maybe the times she was sick with reflux, pneumonia, and ear infections, and was throwing up, the moisture was penetrating the tape. Changed again and the new theory was sweat. After 2 weeks of bio patches coming apart and the site looking like a foot that has been in a wet sock too long, we figured the line must be leaking from somewhere inside where we couldn't see it.

Summer at the hospital,,,the bio patch is in the middle of her chest where the IV is placed

She's having a great time playing with the pulse ox monitor we got to take off :)

I decided it had gone on long enough, so I called the home care nurse and she called the GI doc on call to see what we should do. I was instructed to head to the ER for the line to be inspected for leaks. It was Tues. night Aug 8...I packed myself and Summer up and headed for the hospital. I arrived at the ER around 8:30 and was through triage fairly quickly. The IV team came and checked the line (without removing any tape) and explained that there may be a sheath formed at the end of the line inside that was forcing liquid back out the site, so the line may not have to be replaced. We sat around a little longer and were told that surgery wanted us to be admitted in case the line was to be replaced the next day. By midnight they finally had a room set up for her and the nurse was finishing up paperwork, etc. While she was in the room, Summer demonstrated the face turn blue cough she has had for the last few weeks. Rewind a little....Summer had an ear infection and a cough a month ago that turned into a double ear infection and pneumonia. Fortunately, since she had 2 different antibiotics back to back, the pneumonia was not as severe as it could have been . They gave her albuterol through a nebulizer and started Zithramax for the pneumonia. We had gone to the pediatrician that morning and he said her lungs were now clear as a bell. Back to the ER...her cough was still hanging on a bit and it is quite the scary cough at that. We haven't been sleeping much since every time Summer coughs we jump up and make sure she can breathe....she turns blue and I have to blow in her face to take a deep breath to get back on track. The nurse in the ER freaked out when she saw this and hooked Summer up to a pulse ox to monitor her oxygen saturation, and ordered an x-ray and a whole bunch of viral tests, including RSV, Whooping cough, and Swine flu. This little hiccup delayed us once again....the x-ray was done at 1:30 AM and we weren't in her room until 2:30 AM. I then had to go move my car and bring in my overnight bags...I stopped at the cafeteria because by then I was starving, and ran into a couple of the nurses from the IV team. They told me they decided to check out an x-ray Summer had a few weeks ago of her line, and told me it was too high. They felt like the line should be replaced even if it wasn't leaking, so I expected this is what would have happened. I got into bed at around 4:00 AM.

My night was not very restful...Summer woke up a few times coughing, as she has been at home, and the nurses were coming in to check vitals and change diapers. Summer was so tired by morning, she was actually grumpy. This is saying a lot because this kid is the happiest thing that you will ever see! Even as sick as she has been, she has maintained her happy, smiley, giggly disposisiton :) At 9:00 AM they came to take her Radiology for a dye study on her line. During the study, the 2 docs in the room told me they couldn't see any leakage around the line, but that they had some much more detailed photos that could be reviewed. We went back to our room and ran into the team doing rounds for the morning. They said after all was reviewed, there would be a decision in the next couple of hours...this was about 10 AM. I ran a and grabbed lunch, then waited....and waited...and waited. Finally, around 2 PM, an IV nurse came by looked at Summer's line....this time removing the tape and really looking at it. She immediately told me she could see the moisture build up and that she had detected some on the x-ray pics. She indicated the line would indeed need to be replaced...it was now up to the docs to give the go ahead. I waited some more....and longer....through dinner time...finally at 7:15 my nurse came in and told me they were considering sending us home to come back and have surgery in day surgery as an out patient!

I was, of course confused as to why I would have to sit around all day, be told by a couple people the line was bad, and then just pack up and go home. But, that is what I did. We got home around 10:15 PM...just in time to hook up TPN for the night. I was told the surgery center would call me, but I didn't want to wait around for that, so I tried to call them the next day. I had been to an appt. and spent some time at my parents house, so didn't make the call until it was too late in the day to catch anyone. The next morning (Fri now) I called the transplant nurse, got the right number, and called to schedule. The scheduler told me we would have to come in first for a consultation. I told him I was very frustrated, especially now that Summer's line was showing signs of moisture again, and that I didn't want to sit around and wait for an infection to brew. He was very helpful and squeezed me into the schedule at 3:30 PM. He thought that we might be able to get Summer on the OR schedule for Monday...that sounded okay to me :)

We went to the consult...as soon as the doc came in the room he was upset with how we had been handled. He told me that is was very unacceptable for us to be using a bad line that was clearly a problem, had been repaired twice already, and has been grown out of...Summer was only 8 pounds when this line was put in, and is now 19 lbs 4 ounces...big difference! He said we never should have been sent home and that this was just a recipe for disaster. He didn't want us waiting until next week to have the surgery done and got on the phone. He made some calls and got us admitted in a flash. Summer will spend the night with a temporary IV delivering fluids, and have surgery tomorrow.

Summer has been very hyper today. turning herself inside out with smiles, "jumping" with her legs while on my knee, babbling, all around slap happy! So glad she doesn't have the memories from this place...the nursed love it :) Me too!

I had ignored my instinct to grab my overnight bag on my way to the consult, so I called my parents and they gladly gathered my bags, my computer, and a blankie for Summer, and headed up to the hospital. Thanks mom and dad....the other day I brought my computer, but accidentally left the power cord...my computer lasted about 10 minutes, then croaked....gotta have my life line! This is great blogging time too :)
The heart monitors that once took up her entire chest, now rest on her chubby side...hardly noticeable :) This is a good shot of her war wound....I don't like to photograph it a lot, but at least it blends a little better now...the scar shows how wide her once 2 lb 11 ounce body was...

Summer loves chewing on everything...even your ear at the other end of the line, haha :)

Tom said Hi to her on the phone, she got a huge smile on her face, and said "aah, DAH" Of course this melts his heart :)

Sweet sleepy baby

Chubby hands

A busy summer for Summer

2009-09-04T19:30:00.000-07:00

Now that Summer is f airly healthy most of the time, she has been able to join us in normal family activities :) Last year we spent all our time at the hospital, so I decided to make up for it and drag my kids every where I possibly could :) In fact, there was a time when the boys begged me to let them stay home on the couch, haha...they are glad school has started! Life is starting to feel very "normal" again! Right after school was out in June, my sister and I took the kids to Great Wolf Lodge, an indoor water park. Though Summer isn't water proof, she still seemed to enjoy hanging out with Aunt Debbie and even dipped her toes in the pool.

July was very busy. My good friend, Melanie, got married on the 4th...Summer came along as my photo shooting buddy :) The 14th was her birthday...she got to eat cake for the first time. My oldest sister and her family came in to town and met her for the first time...we went to the beach and Woodland Park Zoo with them. The 18-22nd we went to Ensign Ranch with Tom's family, and stayed in the lodge there. We also went to Point Defiance Zoo and she got to spend a couple of days home alone with Daddy while mom and the other kids went camping.

Summer went with me and little Tom to Scout day camp

My friend, Lynette, and Micaela (below), holding Summer at her birthday party in the park

My nephew Michael holding Summer at the beach

Summer was all tuckered out at the zoo...she loves to sleep like this with little Tom

Summer and Aunt Kathy at the zoo

Cute baby in the stroller :)

Hanging out with Grandma Cameron while we all played on the waterslide at Ensign Ranch

My hubby thinks it's funny to put Summer in strange places....she seemed to think the sink was pretty funny too :)

Brianna and Summer watching the horses in the pasture in front of our lodge at Ensign Ranch

Grandma Cameron with Brianna, Summer, and Emily

Summer likes the fish at the zoo

We had a lot of HOT days/nights in July...it reached 100 degrees! Summer and I would stay up until the house cooled down a little to shut the windows before bed...she usually sacked out on the floor...so cute

Cute sleepy baby

Gotta love the 1 year old chub :)

Every baby has to have a picture like this!

The shark tank at Pt. Defiance...the kids layed and watched them swim for about an hour...Summer joined right in

Emily and Summer with a sleepy shark

Brianna and Summer at the zoo

Sisters

August was filled with trips to the zoo, Northwest Trek, a visit from cousin, Stephen, and a couple of trips to the Pacific Science Center in Seattle. I took a quick over night girls' trip to Leavenworth and Summer got to come along. We ended the summer on a family trip to Zion's camp in Belfair, WA. Fortunately, due to Summer's medical needs, we rented a cabin. We all got sick and were glad to be indoors!

Morgan took this picture of Andrew, Summer and me on a beach in Seattle

Grandpa Norris and Summer on the tram at NW Trek

She may not be able to drink juice, but Summer sure liked "eating" the box

Little Tom and Summer with some huge turtles at the Reptile Zoo in Monroe

Summer and the Space Needle from inside the Science Center

Stroller baby...little Tom took this pic :)

Morgan loves swinging Summer...this is at a park in our neighborhood...Summer loves it too!

Sleepy pirate loves her sealife....Inky the octopus was given to her by her doc at Children's....she loves chewing on all 8 legs! :) It's now official...all my kids love seafood despite my feelings about it :)

Summer is modeling the circlet I bought for Morgan in Leavenworth

Cutie at 13 months old

Summer and I in Leavenworth, WA

Summer is happy even when she is sick!

She's sitting on Daddy's lap on the beach at Zion's camp

Summer chews on everything....I handed her a baby carrot and she went to town on it for a long time. She usually prefers fingers though....she will grab your finger and scrape it back and forth on her two tiny, sharp teeth...ouch!

Summer loves her Daddy...she has a special whine for him to pick her up...she even says Dadda

Going for a ride at Zion's camp

Summer is now trying to kick a mild case of pneumonia, which we caught very early, thankfully! She is no worse for wear....still smiling and giggling through it all :) Since we have been fighting a couple of ear infections and pneumonia, we have spent quite a bit of time at the pediatrician's office...Summer now weighs in at 19 pounds, 4 ounces and is getting taller all the time. Her food had been turned up at the last Childrens' clinic visit and she has been gaining weight again nicely. When we went in last, she had only gained .06 grams, but had grown 2 cm's...they are still very pleased with her overall progress :)

The OT/PT still comes to our house every 2 weeks to work with Summer... she is still making small, but mighty steps in her development! Summer now rolls over (sometimes) and is getting stronger back/torso muscles. She also pushes herself up on her elbows and hands while on her tummy.

It is strange to have a 14 month old baby who still does "little baby" things, but it is also very fun too...she is still so cuddly...can't get enough of that! Summer is doing so well now that she only has to go to clinic once every 4 weeks...next update will be in 2 weeks :) We do have another appt. next Tues. the 8th, with the pediatrician to check her lungs...it seems like she is kicking the pnemonia fairly quickly :)

I will have more time to blog now that we are back in school...hopefully I won't have to play catchup quite so much!

Summer Marie...officially one year old :)

2009-07-16T20:22:00.000-07:00

Summer at her birthday party at the park. It was a nice night with friends and family :)

I have been collecting photos for the last few months for a slide show I just posted here for our little sunshine. I can't believe how great she looks! As I was looking at pictures even from Dec of last year, I was reminded just how sick our little girl has been. Each doctor visit, the nurses and doctors still comment on the great progress she continues to make. Her growth has been fantastic, her body is adjusting to her short bowel, and she still shows no signs of liver disease...this is very amazing for someone in her situation.

On her birthday, Summer had appts. with the neurodevelopment team, and the usual GI team. The neuro team is happy with her progress...there is no set schedule for a baby like her, but if she continues to move forward with speech and motor skillsi, they are happy :) While we waited for the doctor, they brough in a large gift bag full of presents for her :)

Our next stop was lab work at the home care office. We got there and her main nurse had gotten her a birthday balloon...Summer loves balloons and played with the strings through the halls. It was fun to see how excited everyone was for Summer reaching such a big milestone :)

Last stop was the GI clinic. As usual they were happy with her weight gain and progress :) We cut back on a couple of medications and don't have to be back for a month! Yeah :) Next time we go in though, Summer has to have an x-ray to check the placement of her IV line. She has more than doubled her size since it was installed (yeah! ), so it needs to be replaced. Fortuneatly, this will be an elective surgery, not an emergency one. Surgery still doesn't thrill us though :(

Summer now weighs in at 18 lbs. 13 oz...her height, head size, and weight are all growing at the same rate :) She is now in the 25% for height, and 15% for weight...this is up from the 5% for height, and under the 5th % for weight! She is catching up quite nicely :)

Here's her progress for the year:
Born July 14, 2008 at~ 2 lbs. 11 oz. (13 weeks early, 27 weeks 2 days gestation)
2 weeks old~ (got NEC and had 2 emergency surgeries, leaving only 10% of her bowel)
7 weeks~ (had surgery to hook her intestines back together)
2 months~ 7.52 lbs. (had surgery to fix her PDA)
3 months~ 8.14 lbs. (had her baby broviac (IV) installed, we brought her home Oct. 23, 2008)
4 months~ 8.66 lbs.
5 months~ 9.44 lbs. (got really sick and spent New Year's in the hospital, weaned from oxygen)
6 months~ 11.66 lbs.(switched from breastmilk to formula and started gaining more weight)
7 months~ 13.46 lbs. (taken off IV Lipids)
8 months~ 14.76 lbs.
9 months~ 16.08 lbs.
10 months~ 17.67 lbs.
11 months~ 18.48 lbs.
12 months~ 18.83 lbs.

Summer happily playing on the blanket at the park

A tuckered out birthday girl finally at home in her quiet room

Happy birthday girl...she loved playing with this balloon

Balloons also make her sad...they fight back!

She was so tired after her big party, Summer didn't have a chance to try her cake...she doesn't eat much by mouth, so we weren't sure how this would go...we saved a cupcake for her and let her at it the next night...

She batted at the cupcake at first, then accidentally got some in her mouth...she wasn't sure at first, then decided it was pretty good...

yeah for birthday cake!

hmmm, cake isn't so bad

Cute tootsies

Happy Birthday baby!

Happy Birthday Summer!!

2009-07-14T02:20:00.001-07:00

You've come a long way, baby!

Summer started out at just 2 lbs. 11 oz., had NEC,

5 surgeries, pneumonia, pulmonary hypertension, infections, jaundice, and more...

She spent her first 3 1/2 months in the hospital, then came home with oxygen, TPN, and Lipids.

She has been off oxygen since January and has grown out of her pulmonary hypertension, been weaned off lipids (IV fats) for quite some time, shows no sign of liver disease, and has been weaned to only 12 hours a day on TPN through her IV!

Summer weighs in at 19 + pounds of happiness!

We are so blessed to have this little ray of sunshine in our lives...

We love her more each day :)

Happy Birthday Sweetheart!

Though she is still on her feeding tube and IV, Summer has made huge progress toward weaning off of them...these pictures were taken a few days ago when I had to change her feeding tube out...I take every opportunity I can to take shots of her cute little tubeless face :)

Summer is such a lucky birthday girl, ha ha...we are headed to Children's for appts.this morning, then home for a big celebration with friends and family...

She actually gets to eat her birthday cake too...well, that is, if she figures out what to do with it :)

Summer's doing great!!!

2009-06-21T09:30:00.000-07:00

Life has been busy...mostly in a good way :) In the last few weeks, Summer has made some big steps toward weaning herself off of TPN. At the last visit, she had her time reduced to 14 hours on, 10 off. This last week , she had gained 16 grams a day (her goal is 11-13 grams per day) so it was obvious that she didn't need all the calories she was getting. She is now running the IV for 12 hours with the other 12 hours off! We have also increased her NG feeds to 55 ML's per hour and she is eating more solids...she has decided that squash isn't too terrible and the rice cereal is ok too :) It is hard to remember to feed her though...as funny as this sounds. With any other baby, they cry when hungry so you don't have to think about it. Summer is always full and doesn't know the feeling of hunger, so it is a matter of scheduling it in...one more thing to our busy days :) Well, despite the fact that I forget to feed my child (ha ha) she has not suffered...she is now 18 1/2 pounds!

Physical therapy has been going on once a week and Summer is making some good progress. She has been changing in little ways each time the therapist comes...and doing so well, she is ok to take the next few weeks off while we have scheduling conflicts. Summer is still not rolling over yet, but getting close. She is using her hands a lot more, and has really good neck/back control while on her tummy. I have to admit, though I want her to progress, it is fun having a "little" cuddly baby for a little longer than I would have had otherwise :)

She had an eye appt. a few weeks ago too. The muscle control issue in her right eye has gotten better, though we still have to patch her eye to help it continue to improve. They also repeated and eye exam and her vision is completely normal in both eyes...yeah Summer!

She turns one in a couple of weeks....I look forward to her eating birthday cake!

Look closely and you will see the 2 teeth that have sprouted in Summer's mouth this last month!

Summer loves this play gym...she jabbers to herself in the mirror

She is getting good at lifting herself up on her elbows...and still loves her tongue : p

Check out what a multi-tasking mama I have become! I went to the beach with some friends...Summer loved the backpack...she even feel asleep in it :)

Cutie close-up

Happy girl at lunch time on the beach

I got some cute pics while trying to get Summer to show her teeth...

See my teeth!

Summer loves to cuddle with Daddy :) Look how big she is!

Peek-a-boo!

2009-05-25T23:04:00.000-07:00

We got home from a family party tonight and Morgan wanted to hold Summer. Summer had been a little grumpy today and was happy to be home away from so many loud cousins! They sat in the chair and Morgan played Peek-a-boo...Summer thought it was hilarious :)

Baby giggles are the best!

What Summer's been up to

2009-05-16T14:42:00.000-07:00

Here Summer is today (5-16-09) sporting her "lil' nut" shirt and squirrel pants passed on to her from my friend's daughter Morgan...thanks Mel :)

I have been told it has been too long since I have updated this blog, so I am repenting and filling you all in. As you have probably guessed life has been very busy. Spare time is a complete joke and I have to fight my boys to have computer time!

Summer has been doing great! She is still growing great...she now weighs 17 lbs, 2 ounces! That is big enough for her to be on the charts for her actual age...I think it is about the 5th % for a 10 month old and for her corrected age, Summer is well on her way to being on track (corrected to 7 months)...she is in the 25th %.

We have still kept her on 45 ML's per hour continuously through her NG tube, but have been reducing her TPN slowly. Last month Summer was doing so well they decided to cut her TPN hours down to 18 on/6 off. Even with this change...she gained 22 grams per day for that time period!

This last Tuesday was clinic. All went well...they even decided to cut her TPN down to 16 hours on/8 off! Each hour she cuts back on TPN, is about 40 ML's of it going into her system. She is well on her way to getting weaned! :) After clinic I decided to pick up my hubby and give him a ride home. I waited for him for a while until he was ready to go, then we got stuck going in circles in Seattle...once we hit the freeway, we hit the traffic too...it took me about 2 hours from the time I left the hospital to get home...blah! My mom was waiting for me at my house so we could go to Relief Society that night, so I rushed in to change Summer and un-hook her TPN that had finished. When I went to flush the line with saline, Summer winced and cried. I thought that was odd so I pulled out her line to look at it. It seemed fine until I flushed with heparin. Summer cried again and the line burst...blood started coming out through a small hole near the cap end. I grabbed the emergency kit the hospital provided us for this exact situation, wrapped it in gauze, taped it, and clamped it. I changed Summer and back to the car we went.

I made it back to Children's at around 8 PM and went to the ER. We were sent to triage and by around 10:30 we checked into her room...to wait for the glue to dry, again! As you might remember, we did this 3 day stay wait just about a month and a half ago...if her line breaks again, they will have to replace the whole thing surgically....let's pray this doesn't happen! The repair went well and we were out by Thurs. morning. I don't know how we lucked out, but we were in a private room (the same room we had at the end of Dec :) ) so I stayed with her.

While I was there, I ran into some NICU moms I had met a couple of months before. I got to meet one of the babies as he was just released from the NICU and was in a regular room. It is always nice talking to other parents with similar situations...I guess we are part of a NICU mom's club :)

Summer's next clinic visit is in 3 weeks. If all goes well, Dr. Horslen said we could probably cut back to going only once a month :) :) :) I am really looking forward to 8 hours of no IV ! Yeah Summer!

Summer...the camouflaged baby

"What is my sister doing?!" Morgan was playing with Summer and the umbrella...Summer loved it...she was giggling and kicking her feet

Summer has been up to the same mischief...pulling her NG tube out whenever she has the chance!

Morgan and Summer

Look what she can do now!

Summer has been doing physical therapy once a week and improving each time. She is opening her hands more, grabbing for toys, and almost rolling over :)

She loves this play gym my parents got her

My happy girl...she went with me on a field trip to the Science Center with Tom's class

Bumbo baby!

This Bumbo seat is the best thing ever (too expensive tho!!) My sis bought her this on Ebay...it is great! Summer can sit up and play, eat (at least we can try and make her eat, work in progress) and govern over us, as my husband says. He puts her in it, sets her on the table and calls it her judgement seat. She sits and stares down at all of us :)

All in all, Summer is progressing nicely...she is looking and acting more and more like a "normal baby" all the time :)

Ahoy Matees!

2009-04-17T16:02:00.000-07:00

Summer is sporting a new look these days....Dread Pirate Summer!

We had an eye appt. this week...she passed the vision test and has no goombas (what the doc calls tumors, I guess kids' eyes. can be misaligned if they have them), but still has one eye that crosses slightly. She has to wear a patch one hour per day for the next 6 weeks to correct the muscle control issue. The doc feels that it should resolve by then :)

Morgan came in and saw Summer wearing the patch...she giggled and said "Subo's a piate"...naturally, I had to take it a step further...

We just happened to have this Build-a-Bear pirate costume that fit her perfectly...well, almost. She has no tail for the hole in the pants (thank goodness!) and her abdomen is quite a bit longer than the stuffed animals'...it creates a nice halter top showing off her battle scars...appropriate for a pirate, don't you think? :)

Morgan ran and got the Build-a-Bear superman costume and asked me to put it on her...I guess I should draw the line somewhere? I had her put it on her puppy instead :)

Clinic was this week also. Summer now weighs 16 pounds! She gained 25 grams per day in the the last 2 weeks and her labs are looking better all the time. As of today, her TPN recipe had a couple of things removed and is being reduced to 18 hours per day (down from 20) with a 6 hour break! This is a big step! Yeah Summer! We are also trying to increase her solid food intake....she isn't cooperating very well, but I will keep shoving it down her throat :) Nice mom, eh?

Up until now, Summer has had lots of runny poops all the time. As a result, she has a nasty rash more often than not. Her doc prescribed an anti-diarrhea medication...almost magically, it started working overnight! Summer now has a "new bum" as we call it when it all heals :) It seems kind of ironic to me this week just as we are starting to give Summer this medication to help slow down her stools, we are pumping Andrew full of laxatives to get him to pass the magnet he accidentally swallowed Wed. night :) If you would have told me last year my life would be all about this oh, so loved, but so necessary bodily function, I would have laughed! Well, poop is my reality. Oh, the joy I feel...

Update of the week

2009-04-05T16:33:00.000-07:00

This week's clinic visit was fairly uneventful...not such a bad thing :) Summer now weighs 15 lbs 8 ounces and is over 25 inches long! She is still growing at a good rate and all her labs are fantastic :) Good job Summer!! We are not increasing her feeds quite yet because she still has a lot of stools every day and goes in and out of rashes. We are going on a short trip next week, so no change is a good thing too :)

We have a routine check-up on Monday with the pediatrician...we were supposed to check in with him at the first of Feb...oops, time flies. Then, the following week we are back to clinic and at Children's again for an Opthomology check-up. Keep thinking healthy thoughts for Summer :)

Watching glue dry

2009-03-27T09:58:00.000-07:00

The classic pouty face....

This week was almost exactly 4 weeks from the last stay at Seattle Children's and our week off of clinic appts......soooooo, Summer decided it was time to go have a slumber party there again! I think she thinks we get to log our "frequent flyer" miles and cash them in for a Hawaiian vacation....ha ha....no such luck! Her IV was looking a little thin and we were worried it was going to break, so I took her in to get it checked out. Sure enough, it was about to break, so we had to admit her to the "fix-it shop" for a repair job. I was sent home to get some things and had to head back at 3:00...took Summer in, signed paperwork, and got her going.

The IV team came in and repaired the line. Fortunately, it was something they could repair without doing surgery (at least on her...surgery was for her line (: ) It was just like re-wiring and patching a bike tire. The IV nurse cut off the bad end of the tube attached to the clamp and end cap, added a new piece of tubing with a new cap and clamp, and then added a rubber sleeve with glue under it. The glue needed to dry for a minimum of 24 hours without using the line to run TPN, so we got to camp out. Summer cannot go more than 4 hours at a time off the TPN, so they hooked up a temporary IV in her foot and ran the nutrition that way.

This is the old piece of IV line they cut off...the skinny part was connected to the rest of the tube that goes into Summer's chest and straight to her heart. It was stretched thin just above the thicker part of the tube with the clamp (used whenever we hook or unhook her TPN tubing to the end cap)

Here's the new, longer line...tape is our friend! The tube goes in her chest where the blue circle is...that is a special patch that has medication that lasts for 7 days..keeping the germs away. We switch it out, scrub her chest with the same solution, and re-tape it all. At the end of the line is the cap we attach all the tubing we change each day for her TPN. On her tummy you can see her lovely "tire tracks" as the docs call it. Her gut surgery left this lovely scar the exact width her tiny abdomen was when whe was just under 3 pounds. It is supposed to look like a pencil line when she is older....for now it is pretty hideous! My hubby is grateful for it :) Maybe she will decided never to wear a bikini! :)

She was admitted Tues evening and got her own room since she had a stuffy nose. We were in the newest room in the entire hospital...just finished 2 weeks ago...it used to be the Home Care Nurses office :) Tom met me at the hospital to visit, then we left about 9 PM. I hate leaving her there, but the nurses love her and I never sleep well. There is also that issue of a husband who leaves at 5:45 AM for work, and other kids that go to school, sigh.... Life with Summer is at times complicated....we are definitely learning the art of flexibility!!

The next morning I went back to the hospital and spent the day there....watching glue dry. It was nice being there under non emergency curcumstances...quiet....relaxing day :) But, I was still anxious to get her home. The 24 hour mark was 6:00 PM and the doc said as long as the IV team ok'd it, we could go. Just after 6, the IV team checked the line...no leaks :) So, we waited until about 8:00 PM for all the check-out rigmarole to be finished.

Summer's chunky everything...so cute

On my way out, I stopped by the NICU to see if one of our favorite night nurses was there. She wasn't, so I was off again. I got on the elevator with a mom leaving the NICU. She asked if Summer was a NICU graduate and I said "yes". We started talking...her son, who is now 7 weeks old, was just transferred there from another hospital. He was born at 26 weeks after her water broke. He had just been ext abated the day before, but had to be re-int abated that day. She asked if it was a roller coaster for us too. "Oh, yah! It is so hard with all the ups and downs, worrying all the time, watching for little signs of improvement!" Little Abraham has a grade 4 brain bleed and will probably have cerebral palsy. We both got choked up talking about him and Summer...I told her it will get better....what a blessing he is here with her! She also told me his cord was in a knot and the docs told her if he had remained inutero, he probably would have died. What a blessing for them, she agreed. She was so happy to see our little Summer looking so fat and healthy. I told her that she had had a lot of problems and is still working them out. It was so nice to be able to talk with her...I remember watching for parents and babies coming and going while Summer was still there...grasping on to the hope that she would one day be bigger, healthier, and home with us.

Here she is...happy and home last week :)

I am thankful every day for the little things. So grateful Summer's brain is looking good, her eyesight is good, she can hear well, and that she progresses every day. She is so special....even her nurse told me, when I arrived Wed. morning and her whole body lit up with one of her huge smiles, that he knew she was a very special and calm spirit. I am so happy to have her as part of our family :)

Napping in the sunshine

Enjoying a bunny snack :)

More cute conversations from Summer....why not?

Summer's Blessing

2009-03-20T11:43:00.000-07:00

Summer was blessed last Sunday, March 15, 2009...an ordinance performed in the LDS church for babies. They are given a name and blessed with inspired words to live their life by. She wore a dress given to her from Grandma Norris that matches Brooke's buriel dress. Summer also used the afghan presented to Brooke by the Seattle Childrens' NICU (donated by Project Linus). We have this special blanket in her room and cuddle her with it often...it's like getting hugs from her guardian angel :) It was a very special day surrounded by many friends and family :)

Here are a few pictures of Summer in her beautiful dress...

The first taste...

2009-03-18T23:35:00.000-07:00

The unsuspecting cutie prepares for her first "feast"...

Summer had her first taste of rice cereal today! She did the same thing all my kids have done the first time you shove a spoon full of mushy, cold stuff in their mouth and expect them to love it.....BLECH! was the look she gave me.....and repeated that face every time I added another bite to her lips. Of course I had the camera close by and every time she took a bite, made a face, spit it out....I took a picture :) Hmmm....maybe I should back off a little or we could have a Pavlov's Dog's issue going here. It wouldn't be very cute if every time my flash went off, she made that face followed by spitting whatever contents are in her mouth out! Would be funny though, you have to admit :)

The first bite....

....and the second...

...it just keeps coming...

.....blech...

....eating is totally overrated!

Despite the torture, she still had a big smile for me when she was done :)

We are starting with only 1 tsp. two times a day and work from there. Maybe I should try this diet tactic and I could lose that extra ___ pounds I am still hanging on to! (the actual amount of weight is not being disclosed to protect those involved, ME! )

Happy eating Summer!!!

14 pounds, 12 ounces!

2009-03-17T21:20:00.000-07:00

We've started putting her in the exersaucer...she seems to like it....she just needs to figure out how to grab those cool things sticking up in her face :)

Summer had her bi-weekly checkup today. She has now put on another pound in just two weeks! She is a healthy, 14 lbs. 12 oz. :) She has grown enough now to make it to the 50% for a 5 month old, which is her "corrected age". Not too shabby :)

With her huge weight gain and labs still looking great, they decided to try her off the Lipids again! She has been only running them 2 times a week, but NO times a week is so much better :) They feel she is getting enough of her fats from the formula she takes in....she has remained at 45 ML's per hour for about the last month and a half and is still gaining weight nicely. I know now she truly is a Cameron baby after all!

So, new regiment is 45 ML's of formula/hour, IV/TPN (without Lipids) 7 days a week (20 hours per day with a 4 hour break), and we can start adding Rice cereal to her diet :)

Next week Summer gets evaluated by a Therapy Center that comes to my house...she will start working on her fine/gross motor skills.....probably be walking before we know it!!

The taste test....now let's try it with the tongue....

A quick bit of good news :)

2009-03-16T01:11:00.000-07:00

I have been trying to catch up on all the extra appointments Summer needs in the future....she has had so many different things to keep track of being a former preemie! I finally made some phone calls and got the ball rolling for physical therapy (she is behind in her motor skills since she was so early and spent the first four months in bed!) and found out something I didn't know.

The therapy center wanted evaluations faxed to them, so I called neurosurgery. I was under the impression that she needed a follow up appt. with them and a head CT. There were even orders with a referral in the computer. So, I scheduled the CT and called to schedule with neurosurgery. The coordinator looked up Summer's chart and told me everything indicated she was given an "all clear"! They felt like there was NO need for any intervention from the neurosurgeons. She also told me she had no need for a CT and she wouldn't recommend having her get one unless the PCP doc had a reason for concern. The last I heard from the GI doc (in a great English accent) "She's bright as a button!". So nice to hear from him :) (He had been concerned for her when he saw her first head CT showing some fluid areas where brain was supposed to be (in early Oct.)...the 2nd one was greatly improved. )

YEAH! Summer has now been taken off 2 (neuro and pulmonary) extra radars! And, really important ones too! It is so scary having a premature baby...she has been so fortunate!

This Tues. we have her bi-weekly GI appt.....and that's it! Ah, so nice to have simplified a few things :)

Checkup re-cap

2009-03-05T12:20:00.000-08:00

My beautiful girl! She pulled out her NG tube again, so I snapped some more pictures :)

This Tues. we spent another day at Children's for several appts. First on our list was lab work. Every time we go in Summer has blood drawn from her IV for labs. I am usually late to this appt. but they are flexible and it gets me on time for clinic...ah, someday I will be prompt, maybe.

Summer's eyes are dark blue, they match this denim dress :)

Next, Summer had an Echocardiogram. She has had many of these as they are watching her lung disease. Preemies often have immature lungs and she developed Pulmonary Hypertension (that's why she was on oxygen until the first of Jan). As of Jan. 2, 2009 she looked great, so they weaned her off the oxygen (phew, that was HUGE for all of us!) This Echo was a follow up to make sure her lungs were still in good shape after being weaned off the oxygen.

After the Echo, we went to see the Pulmonary team. The doc reviewed everything, checked her lungs and asked me a bunch of ?s. He was very impressed with her progress and commented that he felt like the Echo she just had was a little overkill since the Jan Echo showed normal results. He then told me we didn't have to come back! Her lungs are great and she has officially grown out of the Hypertension :) :) :) She has been demonstrating her strong lungs around here a lot !

Next we saw the GI clinic. The nutrionist was happy to tell us Summer had gained an average of 18 grams per day for the , 12 days. The goal for her is 15-20 grams/day, so she was right on! Summer now weighs 13 lbs 14 1/2 ounces and is on the chart now :) My other kids were always "off" the charts, so this is new for us :) She has been growing consistantly and in proportion. We aren't going to increase her feeds this time, but she has made it to 45 ML's per hour :) The plan is to keep it slow.....it is easier on her gut that way. Her next visit will be in 2 weeks...keep on growing baby!

Cuddles with sister, Morgan

My beautiful daughters

So happy together!

Summer's doing great!

2009-02-20T15:52:00.000-08:00

Our little beauty is re-growing her hair after rubbing it all off. If you look closely, you can see the 4 long hairs in front :) Yes, only 4!

We had our bi-weekly visit to the GI clinic yesterday. Summer is now 13 1/2 lbs! She has now averaged 1 ounce a day for at least the last month :) WOW! Grow, baby, grow :) All the healthy growing means her intestines are growing too....which means we can keep increasing her food :) All the lab work looked great too. She still has NO sign of liver disease, her body chemistry looks good, and her blood counts/hematacrit look fairly stable.

We met with a doctor that we have never seen before, so he reviewed her history with us. He was impressed with the recent weight gain and commented that she is doing excellent. He feels the 17 CM of intestine she was left with 6 months ago has definitely grown and is performing very efficiently. We also discussed whether or not they would install a G tube (a tube that is surgically placed into the stomach rather than through her nose (NG)). He said they place the G tube in kids who they know will never be able to wean off of TPN, eat normally, and are in need of a transplant. I know this has been the feeling all along, but getting further into her weaning process and still moving forward is very comforting to me :) I guess we can live with that ugly yellow thing up her nose if she can! She has figured out how to pull it out though, so sock gloves are becoming part of her new fashion statement :)

Summer has recently discovered how cool her tongue is

Summer's TPN accounts for about 40% of her nutritional calories and the Elecare formula the remaining 60%. That means we are over half there! :) They also did a fatty acid profile a couple of weeks ago...her levels have returned back to normal. So, starting this week, we are going to cut the Lipids down to only twice a week instead of 3 times :) YEAH! Every little cut-back is great news for her :)

She is cuter than ever :) (of course, I'm not biased AT ALL) Here is a bit of her voice to enjoy...she started giggling this past week :)

My little night owl thought 1:30 AM was a good time to chat...ok, I was still up anyway :)

She started yawing at about 2:00 AM...I took the cue and tucked her in :)

Summer in a nut shell..or at the nut house? You decide.

2009-02-18T01:02:00.000-08:00

Well, Summer has graduated to getting her own blog....what a big girl she is. Little does she know, it is just because she takes up most of my blog entries and it is easier this way :) Besides, then my other kids won't feel bad if I take too many pics of her :) Gotta protect that whole sibling rivalry vibe! As you can see, I played mommy photographer/paparazzi again...enjoy :)

At this point, Summer just turned 7 months old and now weighs 13 pounds. She has had a few set backs, though minor ones. Last week she spent 3 days in the hospital with diarrhea again. She had been there for 8 days at the first of the year for this...though this time it was because of a stomach bug or something. They tried to grow all kinds of cultures, blood and stool, and nothing ever grew. After 3 days of getting rest and re-hydration she was good to go again. Ever since she has done just great.

She still runs her TPN for 20 hours each day with Lipids for 3 days a week, but this only accounts for 30% of her total calorie intake. The rest of her calories are obtained through her NG tube on a continuous drip running 40 ML's per hour. We also give her a 1 ounce bottle 4 times daily to get her used to taking a bottle...and squeezing in a few extra ounces!

A few weeks ago, her doc told me her labs look great and she shows no sign of liver disease. Besides the need for an intestinal transplant, alot of SBS (short bowel syndrome) kids require a liver transplant as well. Being soft tissue organs, these are two very risky procedures and having the liver damaged makes things very bad. Fortunately for Summer neither is the case so far. The docs feel she can work her feeds up to the point of getting completely off the IV and just rely completely on food/formula. When this happens, the risk for liver damage will be eliminated as it is caused by the TPN/Lipids in the blood stream on a constant basis. I was also told by a nurse, this last time she was in the hospital, that it is incredible that as small as she is, she can maintain her blood sugar for the 4 hours she is off the IV each day. Most SBS kids on an IV run for 24 hours each day....so constantly, hence the liver damage risk is increased greatly.

We feel blessed each day she is here. I often fall asleep holding her in our recliner and fall asleep half the night, occasionally waking up to look at her cute little sleeping face. Losing her sister, Brooke, and having Summer in our lives despite all the obstacles we have been and will face, has made us realize just how precious life is....and that we are so lucky to have our kids on loan from Heavenly Father :) Okay, this does not make me the perfect mom, I have still been known to yell and nag like the best of us! Perfection is not in my near future, I guess :)

We have an appt. at Children's this Thurs for lab work and a weight check....let's hope she has chunked up some more! She has managed to gain 4 pounds since Dec 30 :) As always, thanks for keeping her/us in your prayers :)

And the chunkin' up has begun....