Happy Baby

We are so fortunate to have such a happy, smily baby.  She's gone through a lot in her short life, but she is the sweetest little girl.  We just lover her soooooo much!

Go Twins!

Close-Up

I love her profile

Playing with her toys

We Take the Good with the Not-So-Good

We had Leah's follow-up head ultrasound and appointment with our neuro today.  The ultrasound showed that her ventricles are slightly larger than they were 2 weeks ago, and her head growth is right in the normal range.  So the good news is that she doesn't need a shunt revision right now... the bad news is that we think it's going to happen sooner than later.  Her ventricles were slightly enlarged, but not so much that there is a definite answer.  Leah is in great spirits, she's eating and sleeping normally, she's not overly fussy or showing other signs of shunt failure. 

Our neuro was able to check to see whether her shunt is actually working.  He inserted a needle into her head where the shunt is and pulled out some fluid.  Leah did NOT like that (who would??)!  She had to lay on her side while I held her head steady.  There was a good flow of spinal fluid that came out, which is a good thing - it means that the shunt is able to drain - but he said that it didn't come out as quickly as a new shunt would have.  So again, some good news and some not so good news.  He wants us to come back in another 2 weeks to check ventricles again and see how things look. 

The obvious question is why aren't we going in right now for a shunt revision when it's inevitable?  The answer is because it's still working, albeit not as well, but our neuro team is fairly conservative and don't want to replace something that is still working for her.  We said this in November when we were deciding when to do the shunt that any day without a shunt (and now revision) is good.  She will likely have more surgeries for her shunt, so we want to do as few of them as we can.  If that means waiting even a couple more days, it will be worth it in the long run.

And so we wait some more.  This just makes me realize that there is not a single answer for how to treat her condition.  It also makes me really thankful for everyday we go without doing surgery.  Thank you to everyone who is thinking of us, praying for us, and supporting us.  It makes it easier knowing there are so many people out there rooting for us and our amazing little baby. 

Ups and Downs

We had appointments for Leah all day Monday, and it’s hard to say that we didn’t get the best news.  We started in Radiology with head and renal ultrasounds.  Then we went to the neurologist to get the results of her head u/s, and they showed that her ventricles are a little more dilated than they would like to see.  I had noticed over the last couple days that her fontanel has felt a little fuller than normal, which turned out to be pretty spot on.  The good news is that her head is still so soft that it can accommodate some extra fluid.  Her head size is still within normal range, as is the head growth rate. 

Our doctor adjusted her shunt pressure from 100 to 70, which means that it will work harder now.  A higher pressure means that the shunt waits until her ventricles fill with fluid more before draining.  If you remember, in December we had her shunt adjusted from 80 up to 100 because her fontanel was too sunken in.  Now it’s a little too full.  Apparently it is pretty normal to adjust it to see what works best…. She’s like GoldiLeah, trying to find the pressure that’s just the right fit.  We’ll go back in 2 weeks to have another u/s to see what her ventricles are doing.  If they are the same or better, then the shunt is still working.  If not, then the shunt is probably not working and we have to talk about maybe doing a shunt revision. 

After our visit with Neuro, we went to see our Spina Bifida doctor.  He reviewed the renal ultrasound (that looks at her kidneys and bladder) and she is very healthy there.  Yay!  Still no catheters for her.  I know we will be faced with that at some point, but each day without them is good.  He also reviewed the head u/s and agrees with our Neuro adjusting the pressure and seeing how she does.  He also wants us to come back in 2 weeks after her next u/s to see what the course of action is for her.  He told us that shunt failure for children under 1 year old is virtually 100% and then goes down dramatically after 1.  I think we are pretty darn lucky to have gotten so far on her first shunt…. 4 months!  I just hate the thought of having to go back to the hospital for another surgery. 

After the full day of appointments, we came home and vegged.  It’s a long and stressful day for all of us.  Just after 6, I finished giving Leah a bath and putting jammies on.  I could tell she was exhausted, so I put her down and she fell asleep by 6:30… not even a peep.  I’ve been feeling her soft spot constantly since Monday afternoon, and it seems a little bit better.  We also thought we noticed it drained well this evening.  Hopefully the adjustment did the trick, but I know a shunt revision is in our future at some point.  Even if it is still working now, the odds are against us that she'll make it much longer without it failing.  Until then, we just keep doing what we’re doing, and loving up on her… which is soooo easy to do!