Ahoy Matees!

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

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

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

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...

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!

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 :)

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 :)