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 :)
This was so cute, I couldn't resist :)
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 day...my 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!
On the way to the airport...she has forgiven us now for taking her off the fun rides :)
