Squeeky wheel gets the grease...or the formula in this case :)

Two weeks ago at clinic we decided to increase Summer's formula to 65 ML's per hour. I asked the doc to tell me how much more we needed in order for her IV to no longer be needed? He said if we could get to 85-90 ML's per hour at her current weight and condition, the need for the extra nutrients from the TPN/IV would be gone! Of course, being the scheming type of person that I am (only good schemes usually involving some sort of vacation my hubby doesn't want to take, haha), I started planning out in my mind how to get this accomplished ASAP.

I jokingly told the nutritionist that in two weeks I would call her and get permission to increase Summer's formula again.....she chuckled and said "we'll see about that". Well, today marked two weeks....I actually called yesterday. Summer's bum, which is usually very red, blistered and rashy, (from the liquid diet and the usually constant diarhea) has been crystal clear for over 2 1/2 weeks now! This is a new record for her :) One of the big signs of her body not tollerating the amount of formula we give her is the rashes and/or skin breakdown from the loose stools. I figured it was safe to ask, so I did....they said, YES :) I turned her formula up to 70 ML's per hour and she seems to be doing just fine :) In fact, in the past few weeks, she has gone for 5-6 hours during the day without any stools....again, a record....she used to poop at least 10-12 times daily!

To sum up, she is at 70 ML's per hour and needs to get to 85-90....we have clinic in 2 weeks where we can hopefully up it another 5 ML's, making it 75...then 2 weeks later, another 5, and 2 weeks after that, another 5, making 85.....this is my plan....hopefully Summer's bum cooperates :)


I can't wait to get that IV out of her body.....I feel sad every time I see her belly and chest with all the scars....my hubby just reminds me it is better to have the scars than to not have her! Amen! :)

Cute bath baby... my sister found this tub for Summer...perfect for the non-water-proof baby :)

Here's a recent photo shoot....I took Senior pictures for 2 friends' daughters last week and stuck some in for Summer too :) They were taken at Bellevue Botanical Gardens.

Look what I found in the garden! These definitely need fairy wings :)

BreAnna took a break from smiling and hoisted Summer up in the flowers :)

Thanks to Hannah standing behind the camera for this one :)

Frogs, always a must :)

Put down the camera and get me outta here!

While we were eating dinner tonight, Summer was hanging out on the couch. At one point, Morgan ran over to tell me (in cave man) the the thing Summer was on was "slidin' down". Soon after that, Summer started whining....we went to check it out and found this. Of course, being the kind of mother that I am, I grabbed my camera, then pulled her out :) Are you surprised?

Reflection

Summer the day after the new line was put in. The old site, in the middle of her chest, will heal eventually.

Summer is now 14 months old! We have had a few things happen these last few weeks that have gotten me to reflect on our experiences with her.

Last week, as you know, we had to admit her to Seattle Children's a couple of times to get her Broviac IV line replaced. While staying in the hospital with her, I walked past the NICU several times, down the same halls I paced while going through the grief of losing Summer's twin, Brooke, and then waiting to hear the fate of our tiny Summer just 5 days after Brooke's passing. My husband, my sister, and I all sat in the waiting area while Summer was in surgery for the first time...he outcome was so uncertain. Summer's intestines had been seriously infected by NEC and they expected to remove portions of it. After some time, the surgeon came out to talk to us. It was about 2 AM and we had been so stressed with worry...the news he brought did not lift our spirits in the least. He explained that he was still in the middle of the surgery, but wanted to let us know what was happening. They were to remove most of Summer's intestines and were leaving a good portion that was infected in for 48 hours to see if it could recover and be saved. He then told us she was going to end up with Short Bowel syndrome, more than likely be on an IV for the rest of her life, which could end up only being 3-4 years if we were lucky, due to liver failure as a result of the TPN/IV use constantly running straight through the liver and resulting in liver failure, then death. He then asked us what we wanted him to do. Save her! So, he returned to the surgery, and we got to see her shortly afterward.

The next 48 hours were very stressful. The 2nd surgery revealed that the pieces of intestine they hoped would recover, didn't, and had to be removed. Summer was left with only 10% of her bowel....pretty grim outcome we had hoped to avoid. The only thing we could do from then on was to "wait and see". No one really knew how she would do....

The last 14 months have shown us how much of a miracle out little girl really is. Not only is she thriving, but she is beating the odds and proving the doctors wrong.

This doll is about the size Summer was when she was born!

We had our monthly clinic visit a few days ago and the news was great! Summer has been weaned down to only 12 hours on her IV running TPN, which accounts for about 28% of her needed caloric intake for each day. She has grown very well, her labs are continuing to improve, and she is progressing forward in all respects. We were told to increase her NG tube feeds to 65 ML's per hour (which still runs 24/7) and then the TPN volume would be reduced as well. I'm guessing we are down to about 25% of calories now from TPN. I was happy about this and asked them if they had an idea when we could just get rid of the IV all together. She just had the line replaced after having it for almost a year with no infection, and I would love to just get rid of this new one before we ruin that track record!

Her doc said if all goes well, like it has, and there are no significant changes in her weight, or condition, we could possibly have the IV removed when she reached 85-90 ML's per hour. That is only 20-25 ML's per hour more! We have currently been increasing the feeds by 5 ML's about every month, so that means we could reach the goal in 4-6 months, I'm guessing :) This is so incredible...we can actually see a possible end in sight! When the IV is removed, Summer's care will be cut down drastically....our lives could be that much more normal!

With this news, I was reminded of the surgeon's predictions....HA!!, way to go Summer, you prove them wrong! :)

I have also been thinking a lot about all the many talented people who have played such a major role in keeping my daughter going. The very first doc to save her life, and the main reason she was even given a chance to survive, is Dr. Ramen Chmait at UCLA/Hollywood Presbyterian. At 17 weeks pregnant, we flew to LA for emergency laser surgery to treat Twin to twin transfusion, that Summer and her twin sister, Brooke were experiencing. Summer and Brooke got here together....they carried each other through to birth, and they were given this fighting chance because of this amazing surgery performed by an incredibly humble and compassionate doctor and nurse. I have joined a group on Facebook for Dr. Chmait and just discovered a video link to a news story that featured him and had clips from a laser surgery performed on identical twin girls. I loved watching him in action and remembered a lot about my own experience when I watched it. It is really interesting and quite the tear jerker (for me at least )...definitely worth watching. Here's a link
http://www.maternal-fetalhealth.org/fetal-therapy/fetal-conditions-treated/twin-twin-transfusion-syndrome/

I've also posted it on my sidebar with a cool pic of Summer's hand as seen from inside the womb :) Dr. Chmait is having a patient reunion next month...I'm trying to figure out how to get myself there, but not sure we can spend the money at the moment..... :(

For now, I am so happy with our little girl, who she is, who she will have the chance to become...

Hang loose :)

Summer's one of the girls...Morgan, Summer, and Sadie

Wow! Look at that doo!

I think I might see some curls coming in :)

The new Broviac (IV line)

Summer's surgery went without a hitch this morning. They came and got her at 9 AM and she was back in her room by 11:30. The surgeon tried to thread the new line through the old vein, but was unable to get the wire (that would hold it open) to make it through. The new licne is in a new vein, which means another small scar on her neck, and comes out just over her left chest muscle. This means we added 2 new scars to her count...making a total of 7. The good thing about the scars though, is that they will dissipate as she grows...most of them will be almost unnoticeable :)

We will take her home tonight after a few hours of monitoring by the nurses, we start up her feeds, and the Huskie's game traffic is gone...when there is a game, since we have to drive around Lk. Washington in front of the stadium to get to the freeways, they block off roads and it can take an hour just to go through 3 or 4 traffic lights! I got stuck in this traffic once...not pretty!

We will go home to a quiet house (always my wish, never granted!) since my other 3 kids will be at my sis-in-law's house for the night :) So glad this finally got taken care of...and it went well :)

There's a hole in thy bucket, dear Summer

Summer's IV has been repaired 2 times so in the last 10 months and is now leaking. About 2-3 weeks ago, we noticed the bio patch (the blue circular patch under the tape at the line site), was looking a little strange. A couple of days after we put a new one one, the blue liner on the itop of the foam started separating, sending the foam to wander around her chest. This patch if full of a special chemical that prevents germs from entering the line site in her chest for 7 days. We typically only change it out every week...we have had to change it out every couple of days since it was coming apart. At first we thought maybe the bio patch was defective, so we switched to a different batch number. Then we thought maybe the times she was sick with reflux, pneumonia, and ear infections, and was throwing up, the moisture was penetrating the tape. Changed again and the new theory was sweat. After 2 weeks of bio patches coming apart and the site looking like a foot that has been in a wet sock too long, we figured the line must be leaking from somewhere inside where we couldn't see it.

Summer at the hospital,,,the bio patch is in the middle of her chest where the IV is placed

She's having a great time playing with the pulse ox monitor we got to take off :)

I decided it had gone on long enough, so I called the home care nurse and she called the GI doc on call to see what we should do. I was instructed to head to the ER for the line to be inspected for leaks. It was Tues. night Aug 8...I packed myself and Summer up and headed for the hospital. I arrived at the ER around 8:30 and was through triage fairly quickly. The IV team came and checked the line (without removing any tape) and explained that there may be a sheath formed at the end of the line inside that was forcing liquid back out the site, so the line may not have to be replaced. We sat around a little longer and were told that surgery wanted us to be admitted in case the line was to be replaced the next day. By midnight they finally had a room set up for her and the nurse was finishing up paperwork, etc. While she was in the room, Summer demonstrated the face turn blue cough she has had for the last few weeks. Rewind a little....Summer had an ear infection and a cough a month ago that turned into a double ear infection and pneumonia. Fortunately, since she had 2 different antibiotics back to back, the pneumonia was not as severe as it could have been . They gave her albuterol through a nebulizer and started Zithramax for the pneumonia. We had gone to the pediatrician that morning and he said her lungs were now clear as a bell. Back to the ER...her cough was still hanging on a bit and it is quite the scary cough at that. We haven't been sleeping much since every time Summer coughs we jump up and make sure she can breathe....she turns blue and I have to blow in her face to take a deep breath to get back on track. The nurse in the ER freaked out when she saw this and hooked Summer up to a pulse ox to monitor her oxygen saturation, and ordered an x-ray and a whole bunch of viral tests, including RSV, Whooping cough, and Swine flu. This little hiccup delayed us once again....the x-ray was done at 1:30 AM and we weren't in her room until 2:30 AM. I then had to go move my car and bring in my overnight bags...I stopped at the cafeteria because by then I was starving, and ran into a couple of the nurses from the IV team. They told me they decided to check out an x-ray Summer had a few weeks ago of her line, and told me it was too high. They felt like the line should be replaced even if it wasn't leaking, so I expected this is what would have happened. I got into bed at around 4:00 AM.

My night was not very restful...Summer woke up a few times coughing, as she has been at home, and the nurses were coming in to check vitals and change diapers. Summer was so tired by morning, she was actually grumpy. This is saying a lot because this kid is the happiest thing that you will ever see! Even as sick as she has been, she has maintained her happy, smiley, giggly disposisiton :) At 9:00 AM they came to take her Radiology for a dye study on her line. During the study, the 2 docs in the room told me they couldn't see any leakage around the line, but that they had some much more detailed photos that could be reviewed. We went back to our room and ran into the team doing rounds for the morning. They said after all was reviewed, there would be a decision in the next couple of hours...this was about 10 AM. I ran a and grabbed lunch, then waited....and waited...and waited. Finally, around 2 PM, an IV nurse came by looked at Summer's line....this time removing the tape and really looking at it. She immediately told me she could see the moisture build up and that she had detected some on the x-ray pics. She indicated the line would indeed need to be replaced...it was now up to the docs to give the go ahead. I waited some more....and longer....through dinner time...finally at 7:15 my nurse came in and told me they were considering sending us home to come back and have surgery in day surgery as an out patient!

I was, of course confused as to why I would have to sit around all day, be told by a couple people the line was bad, and then just pack up and go home. But, that is what I did. We got home around 10:15 PM...just in time to hook up TPN for the night. I was told the surgery center would call me, but I didn't want to wait around for that, so I tried to call them the next day. I had been to an appt. and spent some time at my parents house, so didn't make the call until it was too late in the day to catch anyone. The next morning (Fri now) I called the transplant nurse, got the right number, and called to schedule. The scheduler told me we would have to come in first for a consultation. I told him I was very frustrated, especially now that Summer's line was showing signs of moisture again, and that I didn't want to sit around and wait for an infection to brew. He was very helpful and squeezed me into the schedule at 3:30 PM. He thought that we might be able to get Summer on the OR schedule for Monday...that sounded okay to me :)

We went to the consult...as soon as the doc came in the room he was upset with how we had been handled. He told me that is was very unacceptable for us to be using a bad line that was clearly a problem, had been repaired twice already, and has been grown out of...Summer was only 8 pounds when this line was put in, and is now 19 lbs 4 ounces...big difference! He said we never should have been sent home and that this was just a recipe for disaster. He didn't want us waiting until next week to have the surgery done and got on the phone. He made some calls and got us admitted in a flash. Summer will spend the night with a temporary IV delivering fluids, and have surgery tomorrow.

Summer has been very hyper today. turning herself inside out with smiles, "jumping" with her legs while on my knee, babbling, all around slap happy! So glad she doesn't have the memories from this place...the nursed love it :) Me too!

I had ignored my instinct to grab my overnight bag on my way to the consult, so I called my parents and they gladly gathered my bags, my computer, and a blankie for Summer, and headed up to the hospital. Thanks mom and dad....the other day I brought my computer, but accidentally left the power cord...my computer lasted about 10 minutes, then croaked....gotta have my life line! This is great blogging time too :)
The heart monitors that once took up her entire chest, now rest on her chubby side...hardly noticeable :) This is a good shot of her war wound....I don't like to photograph it a lot, but at least it blends a little better now...the scar shows how wide her once 2 lb 11 ounce body was...

Summer loves chewing on everything...even your ear at the other end of the line, haha :)

Tom said Hi to her on the phone, she got a huge smile on her face, and said "aah, DAH" Of course this melts his heart :)

Sweet sleepy baby

Chubby hands

A busy summer for Summer

Now that Summer is f airly healthy most of the time, she has been able to join us in normal family activities :) Last year we spent all our time at the hospital, so I decided to make up for it and drag my kids every where I possibly could :) In fact, there was a time when the boys begged me to let them stay home on the couch, haha...they are glad school has started! Life is starting to feel very "normal" again! Right after school was out in June, my sister and I took the kids to Great Wolf Lodge, an indoor water park. Though Summer isn't water proof, she still seemed to enjoy hanging out with Aunt Debbie and even dipped her toes in the pool.

July was very busy. My good friend, Melanie, got married on the 4th...Summer came along as my photo shooting buddy :) The 14th was her birthday...she got to eat cake for the first time. My oldest sister and her family came in to town and met her for the first time...we went to the beach and Woodland Park Zoo with them. The 18-22nd we went to Ensign Ranch with Tom's family, and stayed in the lodge there. We also went to Point Defiance Zoo and she got to spend a couple of days home alone with Daddy while mom and the other kids went camping.

Summer went with me and little Tom to Scout day camp

My friend, Lynette, and Micaela (below), holding Summer at her birthday party in the park

My nephew Michael holding Summer at the beach

Summer was all tuckered out at the zoo...she loves to sleep like this with little Tom

Summer and Aunt Kathy at the zoo

Cute baby in the stroller :)

Hanging out with Grandma Cameron while we all played on the waterslide at Ensign Ranch

My hubby thinks it's funny to put Summer in strange places....she seemed to think the sink was pretty funny too :)

Brianna and Summer watching the horses in the pasture in front of our lodge at Ensign Ranch

Grandma Cameron with Brianna, Summer, and Emily

Summer likes the fish at the zoo

We had a lot of HOT days/nights in July...it reached 100 degrees! Summer and I would stay up until the house cooled down a little to shut the windows before bed...she usually sacked out on the floor...so cute

Cute sleepy baby

Gotta love the 1 year old chub :)

Every baby has to have a picture like this!

The shark tank at Pt. Defiance...the kids layed and watched them swim for about an hour...Summer joined right in

Emily and Summer with a sleepy shark

Brianna and Summer at the zoo

Sisters

August was filled with trips to the zoo, Northwest Trek, a visit from cousin, Stephen, and a couple of trips to the Pacific Science Center in Seattle. I took a quick over night girls' trip to Leavenworth and Summer got to come along. We ended the summer on a family trip to Zion's camp in Belfair, WA. Fortunately, due to Summer's medical needs, we rented a cabin. We all got sick and were glad to be indoors!

Morgan took this picture of Andrew, Summer and me on a beach in Seattle

Grandpa Norris and Summer on the tram at NW Trek

She may not be able to drink juice, but Summer sure liked "eating" the box

Little Tom and Summer with some huge turtles at the Reptile Zoo in Monroe

Summer and the Space Needle from inside the Science Center

Stroller baby...little Tom took this pic :)

Morgan loves swinging Summer...this is at a park in our neighborhood...Summer loves it too!

Sleepy pirate loves her sealife....Inky the octopus was given to her by her doc at Children's....she loves chewing on all 8 legs! :) It's now official...all my kids love seafood despite my feelings about it :)

Summer is modeling the circlet I bought for Morgan in Leavenworth

Cutie at 13 months old

Summer and I in Leavenworth, WA

Summer is happy even when she is sick!

She's sitting on Daddy's lap on the beach at Zion's camp

Summer chews on everything....I handed her a baby carrot and she went to town on it for a long time. She usually prefers fingers though....she will grab your finger and scrape it back and forth on her two tiny, sharp teeth...ouch!

Summer loves her Daddy...she has a special whine for him to pick her up...she even says Dadda

Going for a ride at Zion's camp

Summer is now trying to kick a mild case of pneumonia, which we caught very early, thankfully! She is no worse for wear....still smiling and giggling through it all :) Since we have been fighting a couple of ear infections and pneumonia, we have spent quite a bit of time at the pediatrician's office...Summer now weighs in at 19 pounds, 4 ounces and is getting taller all the time. Her food had been turned up at the last Childrens' clinic visit and she has been gaining weight again nicely. When we went in last, she had only gained .06 grams, but had grown 2 cm's...they are still very pleased with her overall progress :)

The OT/PT still comes to our house every 2 weeks to work with Summer... she is still making small, but mighty steps in her development! Summer now rolls over (sometimes) and is getting stronger back/torso muscles. She also pushes herself up on her elbows and hands while on her tummy.

It is strange to have a 14 month old baby who still does "little baby" things, but it is also very fun too...she is still so cuddly...can't get enough of that! Summer is doing so well now that she only has to go to clinic once every 4 weeks...next update will be in 2 weeks :) We do have another appt. next Tues. the 8th, with the pediatrician to check her lungs...it seems like she is kicking the pnemonia fairly quickly :)

I will have more time to blog now that we are back in school...hopefully I won't have to play catchup quite so much!