Following up after the follow-ups...

Sorry there aren't any pictures.  Grandma and Grandpa graciously took Brenner (and Darius, of course) to his follow-up appointments at The Children's Hospital in Colorado so I could go to work today and continue to make an income to support this crazy little family.  So I don't have any pictures.  In fact, Grandma, Grandpa and BrennIus are still on their way home from Colorado.  I just spoke to my mom on the phone earlier today and got the update and so I am passing it on to all of you.

First, the ophthalmologist-  Brenner still has blood in his eyes.  That is the less than happy news.  The good news is that there are no longer big clots or large pools of blood.  So it would seem that the situation is resolving itself, even though it is taking a lot longer than they typically see in kids with this situation.  Surgery poses risks, some of which could effect the vision, so the plan is to continue to wait and see.  I am getting really sick of hearing that.  But I am determined to take the good out of that and go with it.

Next, neurosurgery- The expectation after shunts are placed is that the head circumference measurement will level out, stop jump up.  Brenner's fell back down into the curve it had previously been on.  So the results were better than expected.  However, the faster than normal evacuation of fluid from his head has caused the bones of his skull to somewhat collapse together and overlap.  There are situations in which this also can cause problems.  Thankfully, Brenner's surgeon doesn't seem to think that Brenner will have any of those problems.  He also thinks that the rapid brain growth in babies this age may help to push the bones back into place and reshape his head.  But he thinks that Brenner's head will always be at least a little misshapen.

We just continue on day after day, always realizing that the good things are amazing blessings. 

April 2

So... I'm a little behind.  Can you blame me?  Grandma and Grandpa graciously took Brenner back to The Children's Hospital in Colorado for me on April 2nd to have his eyes checked again.  Dr. Braverman felt like the clots in his eyes remaining from the hemorrhaging were getting smaller.  She didn't want to refer us for surgery, so we wait.  Brenner has to see his neurosurgeon on April 23rd, so we tried to get an appointment for our opthamology recheck then.  They were less than helpful in arranging that, but after some pressure, I finally got it worked out.  So our next check ups will be the end of this month- hoping for more good news.

And then the stuff really hit the fan...

Brenner had an EEG which was normal (YAY!!!!).  His neurologist said we could wean him off his seizure med (YAY!!!!!!).  He was concerned about the big increase in Brenner's head size.  He said to see what neurosurgery said,but if they weren't concerned, to follow up sooner with him.  So... off to neurosurgery.  And THEY were concerned about the huge jump in Brenner's head size.  Brenner got an MRI.  It showed marked increases in the fluid spaces in his brain.  His brain was starting to "flatten out".  It was under pressure.  Brenner needed cranial-peritoneal shunts placed.  Because we were from out of town, they would admit us and do the surgery in the morning.  He would be safe to go the weekend and come back the beginning of the week to have it done if that worked better for me.  I decided to just stay (for a handful of reasons).  So we waited in the main lobby for 2 hours while they found us a room) and then we were admitted.  Brenner ended up going almost 24 hours without eating!  But he was so pleasant about it and the surgery went as well as could be expected.  His head already looks smaller to me.  I am hoping this makes it easier for him to lift his head and decreases the number of headaches he has.  We had to stay over night so Brenner could get 3 doses of IV antibiotics over 24 hours.  We are home now and trying to recoup.  We have follow-ups with the neurosurgeon in a month and with the neurologist in 2 months. 

Back to Denver

Brenner had 5 appointments at The Children's Hospital in Aurora Colorado.  We left here Wednesday around 9 AM.  The van started having problems just outside Cheyenne Wyoming around 11 AM.  After a quick evaluation and being told the van was not safe to drive to Denver, I rented a car and we got back on the interstate.  We were about 20 minutes late to our opthamology appointment, but I had called them around 11:45 and they said they would work us in when we got there.  Unfortunately, the news was not so great.  Brenner still has macular boat hemorrhages in both eyes.  Generally, hemorrhages reabsorb in 2-4 weeks.  It's been 4 weeks.  They want to see us back in 1-2 weeks (our appointment is April 2nd).  If the blood clots are still there, we have to go see the retina specialist to see if they can do surgery to remove them.

This morning was a little crazy.  I had been up a couple times during the night with the boys.  Grandma had gotten up with them in the morning so I could get some sleep.  They were all taken care of and happy, so Grandma got in the shower.  Within minutes, they were not just fussing, but screaming.  So, Mom was up anyway.  They have a favorite lambie toy (pictured here).  I had to make them both bottles so I positioned them so they both could see lambie.  Darius was rather perturbed by that.  But it kept Brenner happy long enough for me to get bottles made.

The last couple days have been a reminder for me that we are in it for the long haul.  Brenner has been sad and startling easy for "no real reason".  As things heal, they are going to be changing and even that is going to be hard for him.  But then this morning he was smiling and cooing at me again and I know no matter what, we are going to make it to the other side of this.

Feeding

We have to add thickener to Brenner's formula.  It has no caloric value, so essentially it dilutes the formula.  So we have to mix the formula 26 calories per oz and then add the thickener .  The formula comes out honey consistency.  Brenner has to drink it through a fast flow nipple.  There was concern he would get tired and not get enough nutrition.  But, being my son, Brenner has had no trouble what so ever and is plowing through bottles like a champ.  In fact, he has gained a pound since we left the hospital.

First follow-up

We saw Brenner's pediatrician today.  Brenner was 13 lbs 10 oz. and 24 1/2 inches.  His heart and lungs sounded great.  His pediatrician was happy with his progress.  He reminded me that everything really is wait and see for now until Brenner is about a year old and then we would know more what effects this may have had.  He also made me feel reassured that Brenner is basically going to be like an older kid with a concussion, only he can't verbalize how he feels to me.  He may have headaches, be dizzy, irritable, changes in appetite.  It made me feel better about giving him Tylenol before bed or when he seemed to be crying in pain.  It's amazing to have so many people supporting us in so many different ways.