Recent news on the medical front...

This last Tues. was Summer's GI clinic visit (now every 4 weeks), and a check up with the neurodevelopment clinic.

First we went to neuro...the nurse practitioner we usually see is no longer with the team, so we saw someone new...she was very thorough. She told me after reading the notes from the previous nurse, she expected to see a baby who was much worse off developmentally, than Summer is. She explained that the notes indicated a concern for Summer's progress being so delayed....this perplexed me a bit. I had been told each time we went in that she was doing fine and they weren't concerned with her progress as long as she was moving forward. The new nurse said she was only at about a 3-4 month level, in her motor skills, in July (when she was one). Now, she has made so much progress (about 5 months worth in 3 months), that she is about a 8-9 month old developmentally. We discussed options to try and maximize her potential...we are going to have her evaluated with an occupational/physical therapist again at Children's to make sure there isn't anything we are not doing for her to progress better. We also talked about her ability to eat solids...this is a struggle for me with 3 other kids and a busy schedule...it is hard to remember to feed a baby that isn't hungry. We are going to see a feeding therapist to help with this :) It will be exciting to be able to get her take things by mouth better than she does...we'll see what happens.

The nurse also thinks getting an MRI of Summer's brain is a good idea. She isn't overly concerned about it, but feels it is good timing at the moment. Summer is scheduled for her eye surgery on Nov. 9th and will be sedated...the MRI requires this, so they want to take advantage of the timing. Summer has had a couple of Cat scans, one which showed many areas of concern, then a follow up that showed large areas of improvement...the MRI will give us a better "picture" of what may be going on. She feels that maybe there is some scar tissue on the part of the brain that controls motor function....sigh.... There is no way to tell what outcome we will have....we just have to wait and see how she does. She said it could mean something small, or big...maybe a slight learning disability, or maybe she won't be the most coordinated child. So, we will get the MRI and go from there....

Socially and mentally, as far as we can tell, Summer is doing great! Her language is developing nicely and she has shown definite preferences with mom/dad, brothers, and toys. She also exhibits jealousy sometimes when Morgan climbs up on my hubby's lap :) These are all good signs in this department :)

Our next appt. was with GI. Summer has made HUGE progress here! Ever since she had her broviac replaced (about 7 weeks ago) her bum has been clear! This, though it may sound trivial or odd, is no small feat. Since Summer has such loose stools, her bum is in an almost constant state of rash....bumpy, bleeding, painful...not anymore! The nutritionist couldn't believe it was the same bum :) Bum transplant! I often think it is hilarious when we are in a room with 4 grown people discussing how cute or clear my baby's bum is...anyone who is part of the GI world understands...that is what life revolves around!

Summer's lab work still looks fantastic! Her liver function is excellent and all other body chemistry they follow, is looking good :) I had increased her formula, in her NG, by 10 ML's during the last 4 weeks and Summer did great....she gained 12 ounces, making her now 20 lbs. 4 oz....and grew 3 CM! This, of course, was good news too :) We got to turn up her formula another 5 ML's...she is now at 75 ML's per hour...her new goal to be free of TPN is 95 ML's per hour :) getting closer! Even better news......THEY DROPPED 2 DAYS A WEEK OFF THE TPN/IV SCHEDULE! This is the best news so far....it is getting us closer to getting rid of her dependence on the supplemental nutrition....and taking out the IV! WOOHOO! I was not expecting this change, so to say I was thrilled, would be an understatement :)

We have another appt. in 4 weeks...the day after her eye surgery and MRI, on Nov. 10. For the next couple of weeks, we will hope for good growth, a clear bum, and tolerance of the lack of TPN those two days....

Another surgery!

Sad Summer...cute pouty lip :)

This is the cutest cross-eyed baby ever! She gets excited or sleepy and her eyes roll around in her head...so funny. But, not so funny. We went to an Opthomology check up yesterday and her eyes are not improving with the patching we are doing, so they want to correct them surgically. We have been watching her vision for the past few months and it has been fine so far. However, the right eye, which is the one that crosses in the most, is not as strong as the left. In order to keep her eyes progressing with good vision, the issue needs to be repaired. Generally the doc tries to avoid surgery with glasses and patching, but in Summer's case, she doesn't need corrective lenses, so the glasses wouldn't help.

So, back to the OR we go! They will make a couple of stitches to tack the muscle down and straighten out the eyes...it is a day surgery procedure, but still requires anesthesia....sigh. The surgery will be in the next month or so...I am just waiting for a scheduler to call me.

Can we ever have too many pictures? I think not! ;)

Happy baby...

My hungry little caterpillar

Saturday night we took the kids out to dinner and to the bookstore...Tom and Andrew both had gift cards from last Christmas they hadn't spent, so it was about time we used them :)

Little Tom chose a "Calvin and Hobbes" Treasury, Andrew picked 2 "Pokemon" chapter comic books, Morgan picked out a "My Little Pony" puzzle book and Summer picked out this, "The Very Hungry Caterpillar" stuffed toy. While we were looking around, I handed it to her...I thought it was cute...and she got very attached to it right away. When we were about to leave, my hubby took it from her...she obviously didn't want us to take it, so we gave it back. He tried it once more and she wrenched her neck around looking for it, whined, and jabbered some lecture toned sound....she squeeled and had a huge smile on her face when he handed it back to her....so, of course we caved, and bought it for her :)

That night at home, Summer was playing with the caterpillar...I took off the now very soggy tag and read it. Without knowing it, we chose a toy that was a very appropriate symbol for our little girl....


Eric Carle's, "The Very Hungry Caterpillar" is celebrating the 40th anniversary of the book, so the author wrote a special note for the tag...it reads:

A message from Eric Carle:

"The Very Hungry Caterpillar"

is about hope. You, like the

little caterpillar, will grow up,

unfold your wings and fly off

into the future.

This little caterpillar of ours has certainly beat a lot of odds...she is on her way to becoming a butterfly :)
....and, to boot, she has matching PJ's :)

Summer has something to say...

Babies have the best expressions....Summer was kind enough to give us a little sample of almost all of hers in one video clip! So cute!

Progress at the moment:

Summer has successfully handled the formula increase so far :) Last week I discovered another tooth...on top in the front...when she bit my finger, ouch :) Next Tues. we go in for an eye check-up...(her right eye is still having muscle control issues)....then the following Tues. is GI clinic and a check up with the Neurodevelopment clinic. Life if busy for her, as usual, and she is just as happy as ever!

Can I dial with my nose??

Little feet...getting bigger!

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 :)