Surgery recovery update #8...the last one :)

Summer is even cute when she cries

You can see how little she still is :)

Grandpa Norris held Summer for the first time Sept. 20...if you look out the window you can see the bouncy balls that someone worked hard to get there from the 2nd floor to the 4th floor...they have been there for a few weeks...too bad we can't play with them :)

The last week the docs have just been watching Summer's progress. She has still been improving. At this point, she has gone way down on her morphine, and her incision is healing nicely. There is only a small amount of it left to seal at the surface. Her intestines are trying to work and she can feel it...when I was holding her the other day, she got a little fussy and was arching her back and wiggling a lot. I put her back in her bed and she did it some more, then tooted. Okay, I know we tell our kids not to use potty talk, butt (ha ha) with Summer it's going to be all about bowels...it's great news for her ! I can't imagine how uncomfortable it must be for her.

Pretty in Pink...yikes did I just say that?

At 10 weeks Summer is 6 lbs. 2 ounces

Summer is getting chubby but still has little legs

You have to admit this profile is pretty impressive :)

Today the surgeons had her scheduled for an x-ray. Her nurse told me they practically had her strung up by her toenails just to get her in the right position for it. Summer sucked on her binky like crazy and held the nurses thumb tightly. They sent a solution through the bowel and watched it. Good news! She doesn't have a fistula, no air leakage, AND the intestines sent the solution all the way through successfully, yeah :) After all she had to deal with after surgery, it was successful after all.

Summer is very happy wrapped up and cozy

The next step is to lower her oxygen from high flow to low, then she can be moved to a regular room finally. At this point they should start feeding her any day through a feeding tube. They will start off very slowly with about 1cc an hour, then go from there. As soon as everything is figured out and she is off the oxygen, we can take her home....I can't believe we are almost there!

The best news ever !!

We got some fantastic news today! I went to see Summer with Morgan and my mom and dad. Summer has been looking better and better all the time, but I thought she was still being x-rayed for the surgeons. They are still watching her, but they haven't needed to x-ray because of her progress. Dr. Lauren stopped by real quick and asked what I thought, with a big smile on his face. Apparently he is very happy with how she is looking. It appears now that Summer's fistula (a small thread-like hollow appendage that spontaneous grows from the intestine) is starting to close up. She hasn't had anything leaking from her incision and it is looking so much better, even than yesterday. She has been taken off of morphine, but looks a little puffy. They gave her some Lasix (for the swelling (caused by extra fluid), and had lost a lot of it by the time we left.

I asked the Dr. about eating and what they are doing next. He told me he is putting in her application for OMEGAVEN!!! What ? Yep, I heard him right! Omegaven, in case you have forgotten, is a replacement IV fat that is experimental and not FDA approved. For kids with Short Bowel Syndrome that have to be dependant on IV nutrition, the Lipids (fats) that they normally dispense, cause liver damage over time and cause premature death. Omegaven is literally life changing!

On top of that great news, the Dr. also indicated Summer will probably have a surgical procedure that will help extend the intestines she has. If she does have this done, she will get to the point where she can be weaned off of TPN!

WOW! Until now, it has been very "doom and gloom"...it sure is nice to hear some very positive possibilities :) Let's keep up the positive thinking! :) :) :)

Grandpa Norris dotes over Summer every time he visits
It was so cute when Morgan sat with Summer and I...she opened her eyes very wide and looked at Morgan, me, and Grandpa...she is really becoming aware of peopleMorgan noticed a scab on Summers's hand and gave her kisses...she touches the owy with her finger and makes a kissy sound
Summer has done well maintaining her temperature in her Big girl bed
Froggy kisses
Another mommy cuddleMorgan says bye-bye to her little sister, baby Subper

Surgery recovery update #7

Andrew came with me to visit Summer on Saturday Aug. 14th. The boys take turns going with me on the weekends while Tom stays home with the other kids...the room is not so Morgan friendly, so it is nice to go and not have to worry about child juggling :)

Andrew is a good photographer...here's a few mommy/Summer shots

Ooops...Andrew forgot to move his finger off the flash. Oh well, creates a "mood" shot :)
Big brother, Andrew with mom and Summer

Summer seems to like Andrew too

Tues. Aug. 16th Grandpa and Grandpa Cameron and Aunt Rachel met me at the hospital to visit. They are surprised (as we all are) about how quickly she has grown! She is now 6 pounds!! While they were there she was moved into an open crib, like a "real" baby :) She is regulating her temperature, so no longer needs an extra heat source...an important milestone :)

Summer's incision looks a little better (Rachel didn't thing so, blech) and not leaking much bile or stool...it is starting to heal from the inside out. It appears that she is still heading forward, though is still on a little morphine. The nurse can still hear good bowel sounds and expects she will not poop every day (because she is not being fed milk or formula, just TPN) The bowel sounds indicate that they are functioning :) The doctor told me today he is a certain as he can be that the bacteria that made her sick is out of her system!

Aunt Rachel holds Summer for the first time...Summer checks her out with one little eye.

Grandma Cameron loves holding Summer...she gave Grandma a huge smile :) :) :)

Grandpa loves the grand kids...the more the better.
Summer adds to her chins more and more every day...how cute :)

Surgery recovery update #6

Poop happens! Summer's intestines decided to wake up and process today : ) The nurse told me she was really grouchy and fussy this morning, so it was no surprise when she discovered it in her diaper :) While I was there she changed her diaper and there was more :) Yesterday the nurse couldn't hear any bowel sounds, but today they could here a lot.

Summer's tummy was a little puffy today, but a little better than the day before. She is still going in the right direction....

Surgery recovery update #5

Guess what I did today...wow, you are so smart...I DID visit Summer :) I took Morgan with me again today and my mom came too. Morgan was supposed to go the playroom with a volunteer...when we got there we were told she just found out there isn't anyone available on Fridays. Morgan had been very grouchy all the way to the hospital, I was looking forward to getting her to the playroom to cheer her up so dreaded trying to keep her happy while we visited. It was a good thing Grandma came along :) My mom held Summer for a few minutes and Morgan asked if she could hold baby Supber. I sat in the chair, Morgan sat on my lap and Summer sat on Morgan's lap. We took some pictures and when Morgan was done, she climbed down. I got to hold Summer for a while longer and Morgan sat with Grandma drawing pictures...she was very happy and content.

The 3 Cameron girls...Morgan really loved holding Summer :)

Morgan kisses her sad little sister

During our visit a surgeon came in to talk. She explained what has been happening. Summer got the infection because of a hole that developed at the connection site on her intestines. Apparently they had reopened the incision because they noticed she had been leaking stool through the incision in one end that had opened on its own. The surgical team will be watching her closely for the next four to six weeks hoping that the hole will close on its own and she doesn't have any remaining stool that pools in a pocket and it drains. If at any time Summer gets sick again or any other complications arises, they will be forced to repeat the operation. This is definitely a drawback...each time they do a resection, they have to remove more intestine...not something we want to happen! As long as she is dealing with this problem she will be strictly on TPN. I asked if this would prevent her coming home...she said Summer may still be TPN 24/7. We are going to have to experience that anyway, so if possible I would opt to have her come home...we are going on 2 months at the hospital! The surgeons are pleased with how well she is doing at the moment, so maybe that can continue...going in a positive direction is definitely what we hope for...

After taking my mom home, I picked up the boys from school and took them to our favorite beach park. It has finally gotten warm enough for the beach, just in time for Fall...typical Seattle weather! Angie and her kids met us there again...check out the cute little girls...true "Beach bums"!

Sadie doesn't like getting very sandy, and yet, here she is :)

Sadie and Morgan coating themselves with sand

Sugery recovery update #4

Summer is still continuing to get better! I went to visit Wednesday and she had been weaned some more on the vent…By the time I left, she was at 26% and was starting to really breathe on her own. She started opening her eyes and had her 2nd eye exam. Her eyes have not changed…they still look great J She is now between stage 2-3 of 3 stages…the peripheral vision. I decided to give Morgan a break from babysitters and she came with me. I was a little worried about how she would do, but she did pretty well…thanks to 2 cartons of chocolate milk! Morgan loves to talk about going to see “baby Supber” all the time. By the time we got there, she told me she didn’t want to see “Supber” after all, but was very excited by the big giraffes in the lobby, outside, on the roof of the building, etc.

You can see how much her swelling has gone down around her neck...the rest is mainly her own naurally grown double chin...and it looks like we have a thumb sucker on our hands!

I went again today, Sept. 11th. Summer has been weaned down to 24% oxygen and should have the breathing tube taken out today! Yeah! J Her Hydro cortisone has been reduced to once every 24 hours and no longer receive any dopamine (for her blood pressure). The only concern at this point is her incision…it is open and oozing a little. Her nurse is fairly confident it will heal up nicely lets hope she is right! She is also showing some signs of jaundice from the TPN and lack of food. Hopefully she will be ready to eaten through her feeding tube very soon…her intestines will start processing the food (hopefully breast milk) which will reduce the jaundice. The nurse told me Summer was passing gas today, so thought she would be able to use the intestines as soon as she is infection free, yeah!

Big sis, Morgan

Morgan fell asleep after church on Sunday...in the dress we forced on her the night before...this technique works well to get us closer to being on time to go to church the next day...the only draw back is her dresses end up looking like they have been slept in...a small pricc to pay for not dealing with a 45 minute fit before church at 9 AM!