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

Wednesday, December 30, 2009

Surgery #8 coming up!

Today we met with a surgeon to discuss placing a G (feeding) tube in Summer's stomach. She has had the NG (nose noodle) now for a LONG time, so they feel it would be best to install the G tube for her feeds. Summer is getting a little more mobile (she has been rolling over more often), her face is getting more sensitive to the tape, there is a chance of her pulling the tube out half way while she is sleeping and could aspirate, the tube is down her throat and could be affecting her ability to learn to swallow, putting the tube back in is getting more traumatic for her (and me), and many more. She has been running 100 ML's per hour 24/7 for a few weeks now and is doing great! However, she is no where near where she needs to be to not have some kind of feeding tube, so it's back to the OR to install it.

A couple of weeks ago, Summer had a CT on her belly and they discovered her stomach is hiding behind her intestines (maybe it wanted a better view of the food heading out?)....things shift around when the operate on the surgery would be necessary to place the tube. Sometimes they can put the G tube in with a scope that goes down the throat, but of course, in an effort to be "different", Summer can't go the easy route! The G tube will be a "button" that is flush with her looks like a plug for something inflatable, hmm, hope nobody mistakes her for a cute parade balloon! We will open the flap, insert the tube, then start the feeds. I have heard it is very easy to use and is not as invasive as the NG tube is....we'll hope for that!

We also discussed her Broviac IV removal. Summer has been off TPN now for 3 weeks and as of last week, she was holding steady. Her blood sugar is normal, she had gained 10 grams per day (the goal was 4-10 grams per day) and her liver function made a huge jump in the positive direction. We check in next week (Jan. 5) with the GI doc and nutritionist, and as long as she is still looking this good, they will give the OK to pull the IV out permanently!!!

The surgeon told me that if given the OK to pull the IV out, he will do it when she goes in to have the G tube installed :) This is great news....we thought she was going to have to have 2 separate surgeries for these 2 procedures :) He also said that, when she is ready to be done with the G tube (he is predicting many months), that the site will likely need to be closed surgically. He suggested that he could fix the gaping hole they left in her chest from the first IV that was removed. And, if he can use the current incision site on her abdomen for the G tube surgery, he will try and clean up the scar, which is pretty gnarly.....hmmmm, maybe we should pass or she might decide to wear a bikini someday....sorry, hubby...these surgeries could have a little plastic surgery bonus on the side....without the bill later for a vain teenager, ha ha!

The surgeon is one who is very familiar with Summer, and remembered details about her previous surgeries from over a year ago. He was very impressed with the progress she has made and was VERY happy for us that she could have the IV taken out soon. He said that none of the surgical team would have predicted she would do so well and look as great as she does now! It's so nice to be able to say....PPPPPLLLLBLBBBBB! Neeener, neeener, neeeener! Thank you prayer :) Way to prove them wrong Summer! :) :) :)

HAPPY NEW YEAR!! Looks like we are starting ours off right!

Thursday, December 10, 2009

Life changing news :)

So, here is the official scoop.....

Yesterday at GI clinic, Summer weighed in at 20 lbs. 5 ounces! In two weeks she gained 5 ounces :) She has been on 95 ML's per hour for a week now and tolerating it just fine...her labs all looked great. So, with the formula goal met and the nice weight gain......we got an early Christmas present....

No more TPN!!!!!!

I was sort of expecting to hear this, but didn't believe it could really be so.....well, it is. The medical team in the room were all smiling from ear to ear.....I was in shock.

For now, we will not give her any TPN in her IV, but still maintain it for another 4 weeks when they will make the final determination whether to take out her broviac line permanently or not. Summer will have her first check-in in two weeks....then Jan. 5 will be the appt. to decide if it stays or goes for good!

I don't know if anyone REALLY knows how BIG a deal this is for our daughter. This is the baby, who was left with only 10% of her bowel, so we were told she would likely be IV dependant for the rest of her life....which meant, a much shorter life for her. If she were to be on TPN always, it would cause liver damage, which would lead to liver failure, and more than likely also a bowel transplant. With these factors in play, her life expentancy was only 3-4 years old. When I was told this, I immediately starting thinking about all the things she would miss out was devistating news.

Well, in the words of a good friend of mine, NEENER, NEENER, NEEENER!!!

Summer is now 17 months old, and if all goes as planned, she will have the IV removed when she is just 18 months old :) I was told a little while ago, by a fellow Children's hospital mom, that these kids don't follow the "rule" book....they don't know they aren't supposed to defy odds and do things the docs think they can't! Yay Summer!!! I am so happy she drums to her own beat :) Let's just hope this strength doesn't come back to bite us when she is a teenager! haha!

Merry Christmas and Hap, hap, happy New Year to us!!!

We also discussed her feeding tube. She currently has an NG tube (ye ol' nose noodle). We had discussed the possibility of installing a G tube (a "button" is installed in the stomach and the tube is inserted through the port there) a few months ago, but decided against it because of the disruption to her gut it would cause. The doc thought she might progress a little quicker with her oral feedings, so we were hanging on to the nose noodle. Summer isn't very far in her oral feedings at the moment, so she is still going to be dependant on the tube feedings. They want her to have the G tube put in. This can be either surgical, or non surgical, depending on the state of her gut. She will be getting a belly CT done soon to take a look and see which option is better for the line placement. Removing the NG tube will decrease her acid reflux, help out learning the eating/swallowing process (removing the tube from the back of her throat), and help with her face. Anytime I have had to remove the tape, or it has been ripped off, her face breaks out for about a week....she has lived her entire life with tape on her face! I have to admit it will be nice to see my daughter's cute cheeks without tape all the time! Summer is also starting to roll more frequently and has tangled her neck up in her feeding tube.....all around, sounds like the G tube will be a good option. The procedure will require an over-night stay at Children's, so we are going to schedule it for Jan.

So, keep the prayers's obviously helped so far! Thanks for all your support :) It's nice to know we have a cheering section!

Thursday, December 3, 2009

She made it!

I just turned Summer's formula tube feeds up to 95 ML's per hour!!!!! I can't believe it happened (finally)...she is at her formula intake goal....every time she has gained weight or grown, the goal has been increased, sending it further and further out of reach, Summer finally caught up! step, drop the TPN :) Summer has been tolerating the formula increases (only 5 ML's every 4 weeks, though she was only on 90 for a week, before I bumped her up last night to 95, he he). She gained 4 grams per day as of last week's check-up and her nutritionist said if she was doing well, I could turn it up this week, so I did :) She has a clinic appt. next Tues., so if all goes well (keep your fingers crossed, prayers coming, rub those rabbit feet), we will reduce the TPN down even further.

I talked to one of the home care pharmacists yesterday...she called to tell me how excited she was that Summer is so close to dropping TPN. I asked her how fast weening usual goes once the formula goal is met...she said sometimes, if the labs are good, and the baby is very stable, they will just take the TPN need to taper off! She did say, of course, this may not be the case for Summer, but I sure hope it is!

Wow, what a great Christmas present this would be!!!!

Sunday, November 29, 2009

Latest (AND GREATEST) News! :)

This was so cute, I couldn't resist :)

Last week Summer had an appt. with the nutritionist in the GI clinic. She woke up that morning throwing up, so I was worried what the outcome would be. Lately, and always the day after she has skipped TPN overnight, she has had a day here and there where she throws up quite a bit. She was going in for a weight check, so didn't think the barfing would help...turns out, the throwing up is due to the lack of acid reducers running through her system, so we are giving them to her daily now...small price to pay :)
Fortunately, Summer still gained enough weight to make the nutritionist happy! She now weighs 20 lbs. 3 oz. :) This was a weight gain of 4 grams per day over a 2 week period. Since she performed as they were hoping, the nutritionist ok'd dropping the TPN to only 4 days per week! This, of course, means only 4-12 hour sessions :) She also ok'd a formula increase to 90 ML's per hour (Still 24/7)...this is only 5 ML's from her goal now! Wooo hooo! By this coming Wed., as long as Summer is still tolerating her formula at that rate, we will increase it to 95 ML's and run it for a week until her next clinic visit. The nutritionist was very happy with Summer's we are too, of course! She was pleased that this process has gone quickly, and has been fairly set-back free :)
I can't believe we are so close to chucking the IV....can't wait too!
Sleepy girl...she pulled out her tube...I pulled out the camera :)

Summer is very ticklish...she has the best giggle!

Shopping the Black friday ads is hard work!

Since her surgery, Summer's eyes have gotten straighter every day...she looks great :)

These socks have fit her since she was newborn...we are almost ready to retire them.

I love her cheeks :)

Summer on Thanksgiving hubby hates the "Whoo" hairdoo...I love it :)

Caught in the act of playing with her food....good job Summer! As part of the feeding therapy (to teach her how to eat solids), we are to let her discover and play with her food. She seemed to really love that idea with these mashed potatoes...

Yummy Thanksgiving dinner!

Tuesday, November 17, 2009

Eye surgery and MRI Nov. 9, 2009

Last Monday Summer had eye surgery to correct her loose muscles in both eyes. We have been patching her eye for a few months and it hasn't helped. I have to admit though, I didn't get the patch on as much as I was supposed to...with all that goes on around here, when I would finally get a round to it, she would be fast asleep for the night. Enough guilty mom confessions....

Monday morning we got up bright and early....5 AM! Groan..... For those who know what night owl I am, this was no easy task. However, when I have to, I can rise to the occasion ( haha...even with the crow). We headed to Children's for a 7:30 AM check-in time. We got all checked in and waited to be called back. Before they would operate on her eyes, she was to have an MRI on her brain.

At a visit last month to Neurodevelopment, her RN ordered the MRI to see if they could get a better "picture" of what may be going on....why Summer's motor skills are still so far behind. She was assuming that Summer may have some scarring in the motor function area of her brain from an injury that occured while she was still very tiny and new...something a lot of very premature babies experience. I was more nervous for this than the surgery....anytime they have to look at her brain, it makes me nervous. Last year in two CT scans, they found some swelling in a few of the was not a concern, so they haven't followed up with any tests. Summer has been progressing, slowly, but surely, but she is still not as far along as they would like to see, so the RN wanted an MRI done. Summer would need to be sedated for the MRI, so it was a convenient time to do it now.

They took us to the MRI room and explained what would happen when they gave her the medication to put her to sleep. They were going to have me hold her....she would go limp from the drug and then we would lay her down and give her oxygen. At the time, I thought that I could do this.....fortuneatly, as they were setting up, the MRI machine broke and I didn't have to see her go to sleep. Talking to Tom later, I realized the potentially tramatic affect this may have had....since I held Brooke as she passed away....this would have been way too close to home! Thank you to whoever broke the machine!!

So, while they waited for a technician to come fix the problem, they sent us into a waiting room...about 15 minutes later, they came in and said they would go ahead with the eye surgery first and hopefully the machine would be up and running when she was done.

Here are a few "before" shots of our cute little cross-eyed girl :)

They gave her a beanie baby bear to take in to surgery with her

She tried to watch a little tv while we waited
I walked with Summer down the hall and kissed her goodbye at the surgery center entrance....

Shortly after I got to the waiting room, my hubby called and said he was on his way to meet me. Right as I hung up with him, the pager went off calling us back to talk to the surgeon. Dr. Baran told us the surgery went well and Summer did fine....she was in getting her MRI and we were to wait some more. About an hour later, they called us back to wait for Summer. She was wheeled in to us in a hospital crib all wrapped up in warm blankets...all we could see was her face. She heard us talk and opened her very red eyes. She looked was heartbreaking :(
Summer was still very groggy from the anesthesia and I'm sure her eyes hurt. She whined a bit, then realized Tom was there....she is a daddy's girl! She was very happy to cuddle with daddy and even cracked some smiles....
Ouch, but still happy...

...for a minute...
After she had enough daddy, she wanted mommy....she was starting to wake up a little more....

When it was time to get her dressed to go home, back to daddy she went...isn't it great having choices?

We got her dressed and they gave us some "elbow no-nos" straight jacket, to keep her from rubbing her eyes too much. This first pair was a little too big....Summer thought it was hilarious :)

Time to go now, Summer was getting back to her old self, even though she couldn't bend her elbows! Silly, happy, girl :)

They told us the results of the MRI would be ready by the next day. We had GI clinic, so I was hoping our doc would give them to us there. We went to clinic and it was not our regular doc...she printed out the report for us, but wasn't able to explain it to me. I tried to wait to talk to our neurodevelopment nurse, and not to read it, but of course my curiosity got the better of me, and I did. It sounded awful. It was described that Summer has extensive thinning of the white matter and corpus collosum. She also has swollen ventricles, and another part of her brain is enlarged (these were all noted in her previous CT and they are not sure if they will affect her at this point). Of course I went straight to the internet, big mistake! I tried not to worry, haha, but had a hard time sleeping or thinking of anything else until two days later when I got a call from neuro.
Apparently the thinning white matter is exactly what she was assuming they would is just a fancy way of saying scar tissue. Summer's brain was damaged when she got NEC at 2 weeks old, which resulted in her short bowel syndrome, surgeries, etc. NEC can contribute to trama to the brain just as much as being born premature can. The corpus collosum is the center white matter that connects the two hemispheres together. It is the pathway to get both sides to communite and cooperate together. Having damage in this area will result in motor delays. At this point, they aren'e able to make any predictions...they can better asses her in one year, when she is 2 years corrected age. This could end up being a severe problem, or she could just be a little uncoordinated....time will tell. Sigh.... More waiting is NOT what I wanted to do, but that is what we have to do with her.
At this point, the nurse did remind me, she was encouraged by Summer's progress in a 3 month period. From the report she had reviewed, then seeing Summer in clinic last month, Summer had made much more progress than she had expected she would. Summer is still moving forward, though slowly, but she is moving forward.
Tomorrow she has an evaluation with an OT/PT/feeding therapist at Children's...they will test her abilities and give us a better idea where she is, and give some ideas for therapy we can do with her at home. We are also going to start her on feeding therapy since she is so close to having her IV removed! This leads us onto a little more positive note...

Summer has done so well, and her bum is still rash free, we got to turn up her formula again. We are still running TPN (IV) 5 days per week, but the nutritionist wants to see Summer in 2 weeks (from the clinic appt last week), and will drop down to 4 days a week if Summer is still gaining weight and looking good :) She is now at 85 ML's per hour....and can increase to 90 after this appt. too. Her goal per hour is only95 ML's per hour! We are SO close to getting rid of the IV....I can't wait :)

Summer's eyes look better each day....we went to a post-op appt. last Friday. Though her eyes are remarkably straighter, the surgeon was not happy with their allignment. Her left eye goes outward now...she wants us to come back in two weeks to asses how she is doing at that point. Summer may have to have the surgery again to bring the eye back in....we have to wait and see what happens....for now, look how cute she looks :)
3 days after surgery...

6 days after surgery

Sitting up with a little help from mom...she looks like a different baby :)

Monday, November 2, 2009

The happiest place on earth...really :)

Nothing but fun lately! That is soon going to change....tomorrow we have a pre-op appt. for Summer's upcoming eye surgery and MRI on the day after, then an evaluation with OT/PT/feeding therapy the following week.

Last week, however, it was nothing but smiles :) I was invited to a reunion with my Fetal Surgeon in LA. I was excited to go and wanted to have company with friend Celia from Utah decided she needed a break from her 5 kids, so she flew there to meet me! :) Unfortunately, a few days before the reunion, they called and cancelled it due to the H1N1 flu scare. I had already bought my ticket, discount Disney tickets, and Medieval Times tickets....needless to say, Summer and I were on our way to sunny California anyway!

We spent 2 days at Disneyland/Ca Adventure and loved every minute of it! Summer loved it too :) I had no idea how many rides she would get to go on with me, so we were pleasantly surprised...we even got a "Fast Pass" to the front of the lines since Summer's stroller acts as a wheelchair (to carry her equipment). It was so much fun riding the rides without standing in line for very long...we got to see more that way :) The rides Summer couldn't ride on, Celia and I did a kid swap...waited in line, then traded off who rode the ride. Summer was so cute...she was just taking it all in...

Athough the reunion was cancelled with Dr. Chmait and Terri (his nurse), I arranged to still go visit them. It was great to see this incredible medical team again...and for Summer to meet them! They loved her :) We took lots of pictures (of course), and shared some laughs...they are re-scheduling the reunion after flu season next spring, hopefully we can make it back :)

Dr. RAmen Chmait, Summer, me, Terri Maitino, RN

Summer took to Dr. Chmait right away :)

Summer did a little reading in the waiting room...

Give him 5! He's why you are here! :)

Summer approves of Dr. Chmait...

Good friends :)

We're on our way to Disneyland!

Waiting for the tram to the park
Summer helped hold the stroller on her lap in the tram

Summer loved the submarine ride...newly converted to a "Finding Nemo" theme...she was so cute
Stopping for gas at Goofy's garage

Summer loved the "It's a small world" ride....we think it may have brain washed her...maybe us too!

Where's Summer in this sea of strollers???

Blasting Zurg in the Buzz Lightyear ride

Despite the loudest set of speakers ever at Medieval Times, Summer slept through the whole thing!

Me, Summer, and Celia...Disneland was decorated for Halloween :)

Where to next?

Cool confetti after the parade came through

Summer LOVED the carousel at CA Adventure....

She was NOT happy when we took her off!

On the way to the airport...she has forgiven us now for taking her off the fun rides :)

Watching CA fade away....

Sleepy baby=happy baby :)

Just for fun....she checked out the seat next to me on the way home...

Summer did great on the plane! I even hooked her TPN up in the airplane bathroom on the way to CA! Summer thought it was great fun :)

As you can see, we did NOT forget anything! I was a regular pack mule...soliciting sympathy from many, haha :) Thank goodness for wheels!