After attending Jordan World Circus, thanks to the Starlight Children's Foundation, @ the Puyallup Fairgrounds...Summer LOVED the ponies, elephants, and especially the high flying acrobatic Ariel princesses (her favorite...she kept saying "printhess, ahh, ahh, ahh (like Ariel's singing) 3-12-2011

Friday, March 27, 2009

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 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 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 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 leaks :) So, we waited until about 8:00 PM for all the check-out rigmarole to be finished.

Summer's chunky 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?

Friday, March 20, 2009

Summer's Blessing

Summer was blessed last Sunday, March 15, 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'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...

Wednesday, March 18, 2009

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... just keeps coming...


....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!!!

Tuesday, March 17, 2009

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 let's try it with the tongue....

Monday, March 16, 2009

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 :)

Thursday, March 5, 2009

Checkup re-cap

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 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!