Summer's a big girl now :)

Summer is 11 weeks old today...only 2 weeks until her due date of Oct. 11! How time has flown...well, only because I am now looking back at it. I feel like 2008 has been one of the longest years of my life. I was telling Tom today I feel like we gave the hospital a little thing we started and asked them to grow us a baby...well, she is that! The last few days I have really been able to enjoy her as she has become more interactive and is looking more and more like the babies I am used to holding. She has such a sweet spirit and good disposition...I have loved getting to know that about her. I can't wait to get her home and really get to know her. All of her. It has been so hard letting others take care of her and enjoy her for hours and hours a day and only get to "borrow" her for a few hours as many days as I can get away. We are getting closer to coming home...

I didn't visit yesterday, so I called Summer's nurse. Well, of course on a Sunday I decided not to go in, she was taken off the oxygen for the whole day! They even took her on a stroller ride through the NICU and down the hall. I was very sad I missed that, but happy she has made it to that point too.

Today I expected her to be cannula free, but she still has the oxygen on the nasal cannula. During the night she was having problems with her breathing so they put her back on it. However, she is basically on room air, just needing 1/4 liter for now and will more than likely be turned down to 1/8 liter on the floor. Debbie and her kids came to visit and Micaela got to hold her and see her for the first time. Morgan gave us all a run for our money (oh how fun she can be at the Hospital! HA) but it was helpful for Debbie to take her down to the play area while I spent a little time with Summer and Micaela :)

Micaela loved holding Summer...they just met today :)

Morgan loves riding in the wagons provided by the hospital...she is quite the handful !

Aunt Debbie hasn't seen Summer for a couple of weeks...she loves to kiss her :)
Summer, prepare to be spoiled!

The nurse told us she would be moved today, but it didn't happen while I was there. They called us tonight and said she was moving! This is a major milestone...yeah Summer! Now we will be taught to be more hands on when we are there and take care of her needs. This is totally different from the NICU where we are mostly the observers. I will enjoy that...I have always felt like she really isn't my baby, but just one I visit a lot :( Can you believe it? I am actually asking to change diapers! Well, when they are little, they are the cute ones :)

Little Miss Sunshine is a night owl!

When I went to visit Summer Friday, I walked in to see her wiggling all over her bed and squawking a little. I picked her up and she was very soggy. The nurse came in and we changed her all the down to her bed. She pooped! Yeah again :) It had been a couple of days since they started her food, so this was great. Now they are watching to make sure she doesn't do this too often...though they want to see her bowels moving, they don't want the food to run through too quickly and dump...leaving all the vital nutrients behind. Since Summer's intestines haven't been used fjor some time, the villi (little hairs) that are inside the intestine and help move the food through slowly enough to process it, are gone. It will take a few weeks for more villi to reproduce inside and help larger amounts and higher fat content breast milk to be processed.

After we changed her, Summer was very alert and stayed that way for most of my visit...I took advantage of it and got a few very concentrated shots :) She was staring intently at something behind me...so hard, she went a little cross eyed...her eyes even look like they might be blue!

I just recently returned from the hospital...yes, it is now 1:49 AM on Sunday! Ok, I have been home for almost an hour. By the time I changed for bed, took out my contacts, shut all the windows, turned off all the lights, locked all the doors, turned of the back sprinkler the kids left on (these are all things my hubby doesn't notice on the way to bed :)), plugged in my computer, pulled out the milking machine and strapped on the ol' pumping bra, I had managed to kill almost one whole hour, wow. Time really does fly when you are having fun, haha.

I decided to go on my weekly Sat. visit with one of the boys last night and didn't get out the door with little Tom until almost 6:30 PM. We grabbed Arby's and got to the hospital around 7:30. Summer was wide awake when we got there. Apparently she thinks nightime is playtime. I have never seen her eyes open for so long and have her be so alert. The nurse said she was pretty crabby last night and stayed awake a lot...I have heard that from several night nurses. I decided, and told her this, that the nurses need to get her straightened out before she comes home....ha ha, we both said, good luck with that! I changed her diaper and clothes and held her for a while...she went to sleep...then little Tom held her and she slept some more. We decided to leave before the UW Huskies game (right around the corner) was let out. Traffic is horrid...

She's a real girl now! So cute

Little Tom hasn't seen Summer for a few weeks...he said, "she's not even one and she is so huge!" He is very cute with her

We didn't make it. Despite getting out on the road before the game let out, they still had everything barricaded and re-routed by the time we got out there. We grabbed a milkshake from Burgermaster and ended up going in circles for almost an hour before I just decided to head back to the hospital away from the traffic, and wait it out. By this time, it was around 11 PM. Little Tom and I headed back upstairs and stayed until almost midnight. Summer needed to be changed again and woke up. I held her up to help her balance her neck and patted her over my knee. These are normal baby things I haven't been able to do with her because she is always so sleepy during the day. We've gotta change that for sure! When she comes home, I will be a walking zombie if I don't get sleep at night for sure :) I also got to see her weighe...Summer is now about 6 pounds, 7 ounces...of course I took pictures...the poor girl is going to get camera flash burns some time soon!

She likes it when the nurse sits her up...she can hold her head up a little

Mom, Summer, and little Tom

Summer is now 6 pounds 8 ounces!

They had weaned Summer's oxygen to around 26%, on 1 liter, and low flow. This is where Dr. Jackson wanted to see her before she gets transferred to the floor (out of the ICU), so maybe she will be transferred very soon :) There has also been the breast milk debate...whether or not she will be able to take it. It sounds like they might possibly try her on it in a few weeks, so the pumping continues...I hope my freezer holds up, haha...

No more growly tummy

Summer started back on her feeding tube Wed. Sept. 23rd. They have put her back on Elocare (the pre digested formula she was taking before surgery), giving her only 1/2 cc per hour. After a day of it, there hasn't been any risidual in her tummy and no dumping. I was slightly disappointed that they didn't start breast milk...I have an upright full size freezer at home FULL of yummy milkshakes just for her that I would really like to use...maybe later, they say....

Ah, more waiting....more day by day....more we'll see....sigh. More frustration.

Despite that minor mommy moment, I am sooo happy she is doing well. I know that whatever is best for her we will take....and take we will...all the way home : ) when it comes time, of course! I also peeked at her belly incision today and it is looking great! It is healing nicely and looks to be almost completely sealed shut....good job Summer (and thanks for the prayers too!)

When my mom and I went to visit her, Summer was in her favorite position...on her belly with bum in the air :)

Though Summer is looking big in pictures...she can only fit in my forearm from head to toe...she is very cuddly. I have been known to close my eyes holding her a few times...

Summer's beautiful voice

First of all, I want to apologize to all you breastfeeding moms...prepare to let down. I happen to be safe from this mean trick as I only let down when I strap my pumping bra on...hahahahaha :)

Summer's cry is something I always enjoy hearing (for now, talk to me in 6 months after I have been up all night with her every night!) She definitely has something to say about all the nasty tape and contraptions she has to have...And, as I mentioned in my entry on July 7th with her ultrasound pic, (as baby A) it looks like she will be a singer after all! We never got to hear Brooke cry, and all you new moms know what a wonderful sound it is when your new baby arrives...so here it is...isn't it sweet?


Now where's the binky? :)

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