Ham central!

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.....

...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!

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...

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!!

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!

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!

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!