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 ventricles...it 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 terrible...it 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"...baby 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 home...by 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 find...it 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 :)

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 Nov.9th...clinic 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 me...my 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!

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!