Leah Needs Your Help!

We need your help!  Recently I heard about a study that is looking to identify genetic factors that influence Spina Bifida.  I filled out a quick, easy and confidential online survey and then provided a saliva sample from both myself and Leah.  This project also needs moms who have babies without Spina Bifida.  If you are willing and able to help, please click on this link! 

http://sbgenetics.org/enrollment.html

I’m hopeful that someday a new mom will never get the heartbreaking news about her baby.  I’m even more hopeful that someday there will be ways to reverse some of the effects of Spina Bifida.  Maybe Leah will be able to walk all on her own!  Maybe she won’t ever have to think about a shunt revision!  I can only dream.

Little Miss 6 Months Old

It's hard to believe our little baby is 6 months old.  So much has happened since that day in November when she decided she was ready to meet us... a few days earlier than we expected!... and she's been surprising us ever since. 

We've been really busy lately with lots of appointments.  We went back last Monday for our routine ultrasound and appointment with neuro.  We usually just see the neuro nurse assistant but this time our neurosurgeon, Dr. Nagib, came in to see us.  They saw that her brain ventricles were a little more enlarged since last time and that her head growth was in the normal range.  She seems to be in good spirits, eating, sleeping and acting normally so they decided we don't need to come back for 6 more weeks.  It's been tough coming in every other week - it's a stressful day, it's time-consuming, and we get so nervous about what kind of news we'll get - so we're thankful not to be coming back until mid-June. 

Last week we had another Cranial-Sacral therapy appointment.  Her therapist commented that her she was really tight through her hips and legs and had to really loosen her up.  I know that's because we haven't spent as much time as we should on her physical therapy lately.  She's been really tired at the end of the day and now with the teething she's been fussier than normal.  But it's a good reminder that we need to be working her legs as much as we can, and shows just how important that daily activity is.  Even a few days of not doing those exercises affects her.  Last week we also took her to the eye doctor, and her eyes look really good.  There was some concern with drifting back when she was a tiny baby, but that has cleared up very nicely.  We will continue to see her eye doctor every 6 months to make sure her eyes stay healthy.  Since she has hydrocephalus, it's important to make sure that added pressure isn't affecting her eyes.  So far, everything looks good (yay!) but this is just another thing that goes along with her Spina Bifida.

Then finally we had her 6-month check-up with her pediatrician.  Everything seems to be right on track with her development.  She's doing everything he would expect her to do at this age - she's moving toys from one hand to another, looking up when her name is called, and starting to remember a toy when she drops it.  It is really nice to hear that she is meeting these milestones.  But this is when we start to see that she's not meeting the physical milestones.  She isn't rolling consistently, so we have to work harder with her tummy time.  And things like pulling herself up or starting to crawl aren't going to happen "on time."  All in all, though, we couldn't be happier or more proud of how she's doing!  For her stats:  she's 15#, 26" and head size of 42 cm.  When she was first born, she was barely on the charts b/c she was pretty small.  Now she's at the 50th %ile for length, 30th for weight and 25th for head size.  YAY!!!  I can tell, just in the last couple weeks, how much heavier she feels and that she's putting on the weight.  She has chubby little arms and legs and her face is getting rounder.  And she's getting so cute!

Now we're on to teething!  This past week she's really been working on those bottoms and I can tell they really bother her.  She has been fussy and really drool-y so I hope they come through soon to give her a little bit of relief.  Although, I kind of want them to stay away for a little while longer... there's nothing like a gummy, toothless grin!  We also started giving her solid foods.  On Saturday morning I made some oatmeal.  She was more than willing to open wide but then wasn't quite sure what was going on when she realized it tasted different and had a new texture.  She got a little more oatmeal last night, and seemed to kind of get it a little more.  I bought a sweet potato and an acorn squash that I'll give to her later this week or weekend.  It's so much fun to watch her try new things. 

This weekend was also my 1st official Mother's Day.  Last year I was about 12 weeks pregnant so we had a little celebration but this year was so much better.  Ty cooked breakfast for me, we went to church and then went down by the lake.  It was a beautiful day, we had lunch in a cute little place and walked around town.  I couldn't have asked for a better way to celebrate being a mommy.  Then we grilled salmon and lobster tails for dinner and finished off the evening with some chocolate cake and ice cream.  Yummy!!!  Being a mom is so much better than I ever thought it could be.  I couldn't imagine not having this little baby in my life, I just love her so much.  And it doesn't hurt that she's the cutest baby with the best little personality. 

Whew, that was a long update!  I'm happy that we don't have any appointments coming up for a few more weeks.  We're just going to enjoy this beautiful late-spring weather and our 6-month old baby girl!

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!

Talky Talky

Leah is starting to make lots and lots of noises.  She talks and babbles and coos, her sounds vary in sound and pitch, sometimes she is loud, sometimes she is quiet.  We can tell if she’s hungry, tired, happy, in a good mood or about to lose it.  I’m amazed at how she can communicate with us already!  Ty even got her to giggle.  He was flying her around and she was really enjoying it.  We think she’s going to be a little bit of a daredevil.  It’s so much fun to see her little personality coming through. 


We had a pretty exciting weekend.  On Saturday we put her in the stroller and went for a walk to the meat shop and grocery store to get dinner, which was over an hour walk.  Then we went to one of the Minneapolis lakes on Sunday for a long walk.  She really loves her stroller, and it was great putting her in a sundress and summery clothes.  I can’t believe the beautiful weather we’ve been having!  On Saturday we also put the infant sling into the bike carrier, and Ty took her on her first bike ride.  The look on her face was hilarious… her eyes got huge and she had to be wondering what the heck was going on!!  Ty has been waiting a year to be able to bike with her.  Yes, since we found out I was pregnant this time last year, he’s been so excited to take the baby for a bike ride.  Ty even picked her up from daycare on the bike today!  

I’ve now been back to work for a month, and I think our life has gotten into a little bit of a routine.  For a while after starting daycare, Leah was getting up 1-2 times a night.  I think it was a combination of her being over-tired (she doesn’t sleep at daycare) and over-stimulated (so many new things to see and do).  Thankfully, she’s now going 9-10 hours at night and only getting up early in the morning.  The weekends are our time to relax and catch up on sleep.  I let her sleep in on Sunday morning and she didn’t wake up until 10:15.  She isn’t the greatest napper, and I’m having a hard time getting her to nap in her crib, especially when she’d rather snuggle with me.  My mom says she knows how to yank my chain… yes, but I’m a sucker!  Especially if she’ll sleep with me for an hour vs. in her crib for 15 minutes.

Now for her Spina Bifida update………..…..……….

Is there really nothing to report?!?!  Woo Hoo!!!  We go back to Children’s for the full-day of appointments in 2 weeks, but so far, she is doing just great.  She got over her little cold, I think she’s teething, I feel her fontanel constantly.  Sometimes I think it feels full but then I feel it again 10 minutes later and it’s fine.  We still work her legs several times a day to keep them loose and stretched out.  When we were walking around the lake this weekend, I thought about dipping her feet in the sand and water, but then I realized she wouldn’t be able to feel it, and it made me sad.  Hopefully that will be the worst thing we have to deal with in terms of her condition, and if that’s the case, I would consider us extremely lucky.

Here are a few pictures from Leah's baptism last weekend.

Action shot

Godparents

Grandparents

 

The Cunningham family

God Bless Leah

We had a very exciting weekend... Leah was baptized!!  It was a very special weekend for us to have our families here to celebrate with us.  My whole family make the drive up from Illinois, all 12 of them, and we had a great time.  They got in on Friday afternoon around dinnertime.  Leah was pretty worn out from the day and week and she had a little meltdown.  Poor thing, she wasn't used to so many people in her house and I'm sure she just wanted a little bit of quiet time.  She will need to learn that there is no such thing as quiet time around the Cunninghams... LOL!  I put her down at 6:30 and she was out.  Saturday was a much better day.  Everyone came over to our house, we went for a walk down by the lake because it was such a beautiful day.  I never imagined that we would have 60-degree weather in early March!  Leah even took a couple naps and was in a great mood all day. 

We had her baptism after the 4:30 mass at our church.  In addition to my family, Ty's parents and cousins and their little girls all came.  The only people missing from the party were Ty's sister, brother-in-law and niece, who live in Nashville.  Leah did great with the water being poured over her head and just looked around, like she always does.  Everyone came back to our house for taco dinner afterward.  Leah even stayed up for most of the celebration and didn't really start fussing until close to 8:00.  We were so proud of how good she did all day, with all the noise and people and being passed around.  She is just such an easy-going baby. 

The Cunninghams stopped over to our house Sunday morning for breakfast and to try and get another cousin picture before hitting the road.  It was a quick weekend, but we had a great time.  I am so grateful that they were all able to make it up here.  This was the first time since last Thanksgiving that everyone has all been together.  It really meant a lot to me that 12 people drove all that way for us and for Leah.  When Leah was in the hospital for surgery, our pastor offered to baptize her there.  I couldn't imagine doing it anywhere but our church with all our family with us and being able have a celebration. 

Leah's baptism dress came from her Great-Grandma Ellie, my mom's mom.  The slip was worn by my Grandma on her baptism, as well as my mom and her siblings, me and some of my cousins.  The gown was Ellie's 1st Communion dress.  It is a really beautiful dress and I love that it has special meaning to our family. 

Leah also turned 4 months old on Saturday.  I can't believe she's getting so big!  She's talking a ton and she discovered her hands the other night.  It was so cute to watch her look at them and get really surprised when they started moving.  She is also able to see people farther away, and she can find me from across the room.  I think she's working on her bottom teeth because she's constantly chewing on her hands and has been drooling more than usual.  We don't have any doctor appointments coming up until early April, so hopefully March will be a very quiet month for us.  Maybe this will be the month when we get some giggles.