Back in the Saddle

I’ve been back at work for 2 weeks now.  The transition hasn’t actually been too bad.  I came back to work part-time with Mondays off, so that has helped tremendously.   Our first week was actually pretty smooth, and Leah was beyond tired every night, so she went right to sleep.  I think it’s been kind of easy because I just love our daycare so much.  She is usually in a different place when we pick her up, like in a vibrating chair, or on the floor in a boppy, they are doing tummy time with her, and this week they went for a stroller ride and a field trip to the preschool room.  They also have a daily activity… yesterday was arranging flowers, earlier this week was bubbles, last week they did shapes, next week they’ll do animal sounds.  When I dropped her off yesterday, the teacher told me she just loves Leah and calls her “my little princess.”  I thought, ok, I’m good. 

Last week she got her first cold.  I knew it was going to happen once she started daycare, but I didn’t realize it would happen so soon.  Everyone keeps saying that it’s good for her immune system, which I know in my head, but it just breaks my heart to see her not feeling well.  We were off on Monday, Ty stayed home with her on Tuesday, and we had a snow day on Wednesday.  I think that helped having her home a few days to get some extra rest. 

I did call our spina bifida doctor to ask about what to watch for.  Anytime Leah is sick, there is a chance that it will cause her shunt to get infected… it is a small chance, but we need to be aware of it.  Dr. Marker wanted her to come in so he could see her, especially since she is so young and this is her first cold.  This was on Monday (another reason I’m glad to have 1 day off each week), and we got right over there.  He wasn’t too concerned with the cold, and she was still in good spirits – smiling and content (she needs to teach Daddy a thing or 2 about having a tiny cold).  The one thing we needed to watch for was her breathing.  Because of her Chiari malformation, she could have some breathing problems and is susceptible to respiratory infections.  That’s also why she takes the caffeine.  Now, almost 2 weeks later, she is pretty much all better.  She still has a little raspy cough in the morning, which the doctor said is normal since she’s laying down all night.  I keep feeling her soft spot to make sure the shunt is still draining.  We had a few sleepless nights last week, but now we’re definitely on the mend. 

Earlier this week she had her 4-month check-up with her pediatrician.  Ty took her to this appointment – alone – so I made sure to dress Leah in an outfit that would be easy for him to get her in and out of.  For her stats:  she weighs 12 lbs, which is the 20th percentile, she is 24” long, the 50th percentile, and her head size is in the 15th percentile.  Then he went through the checklist about what a 4-month old should be doing: sucking her fingers, smiling, cooing/babbling, pulling things into her mouth – and she did everything right there in his office.  He is very happy with how she is growing… she is a long, skinny baby with a small head, and she is right on track with her development milestones.  In every way she is just a normal baby.  Wow, I can’t believe I just said that… she is a normal baby.  SHE IS A NORMAL BABY!!!  I know we have a long road ahead of us, but I am so proud and overjoyed with how well she is doing today. 

Here is one of my favorite recent pictures of her.

How Cute Is She?

Here are some recent pictures of our favorite little girl. 

It's Finally Over

Yes, my maternity leave is finally over.  Oh, it makes me so sad to think that someone else gets to spend all day with Leah and I have to go to work.  I know it's crazy but I think that going to daycare will be harder on her than on me.  I'll be going back to work, which is familiar and I'll know what to expect.  But Leah has never been away from me for more than a couple hours.  She'll have to eat from a bottle, sleep (or not sleep) in a noisy room, and wait her turn to be held.  She's used to getting warm milk from mommy whenever she wants, snuggling with me all day, falling asleep in my arms and chilling in our quiet house.  I'm afraid she's in for a rude awakening!  I've been trying to get her on a sleep schedule that it more suited for daycare, so her mornings of sleeping until 10 are over.  She usually wakes around 7 and then I put her back down for 3 hours, but I've been keeping her up.  This way I can figure out when she gets sleepy and is ready for a nap... which seems to make her tired all day.  Hmmm, we have to get this figured out.  I have a feeling she'll be very sleepy and cranky when she comes home from her first day.

I did get a little bit of time out of the house this weekend.  Ty was so thoughtful and got me a gift certificate for a hair cut and mani/pedi.  It was really nice to have a little pampering done.  Oh, how I love having pretty colors on my nails and my hair washed and blow-dried.  It feels so luxurious :)  Today was my last day home with Leah.  Ty asked if I wanted him to take the day off, and I really didn't.  I needed this last day with her, and we pretty much chilled in bed all day.  I could tell she really liked the extra cuddle time, I got a lot of smiles from her.  She melts my heart.

On Friday Leah and I had a playdate with some SB moms.  Our friend Maggie, whose 5-year old has SB, had us over to her house for a few hours.  It is so nice having these other moms who have experienced what we're going to experience, who have recommendations for doctors and advice for advocating for their kids.  Spina Bifida is so different for everyone, some have more shunt failures than others, some kids don't even have shunts, they have surgeries at different times in their lives, it's not a straightforward diagnosis.  What works for 1 kid won't work for another.  I find that frustrating and liberating at the same time.  I like that I have other moms who are going through the same things I'm going through and can share the emotions that I have.  I also like that Leah will grow up with a group of people who are like her, who have similar experiences with all kinds of doctors appointments and medical equipment, and who can relate to having this condition.  For Leah to see how successful and happy these kids are, especially kids a few years older, will hopefully show her that she can be too! 

Wow, it's been such an incredible 3 months.  It's been the best 3 months of my life, getting to wake up everyday and see her little face, snuggling with her, watching her smile for the first time, seeing her grow and learn new things.  I'm so jealous of her daycare workers who get to spend everyday with her. 

She's Mobile!

Leah rolled over tonight!  Twice!!  She actually did it for the first time last week but I thought it was cheating a little bit because I kind of helped her.  But tonight she was doing tummy time after her bath and she got on her side and then flipped her little legs around.... all by herself.  Oh we are so proud!  I think I'd be excited for this milestone if she was a "regular" baby, but it seems like this is so much more of a big deal because her legs aren't supposed to work.  It really gives us hope that she's going to be mobile in her own way.

Big Week

Leah had a very exciting week so I'm not surprised that she's still sleeping at 10am.  On Monday we had a full day of doctor's appointments.  We started out with head and renal ultrasounds.  The renal u/s checks her kidneys and bladder to ensure they are in good health and to find out whether we need to empty her bladder using catheters.  Thankfully it shows that everything is in good working order and she is able to go on her own.  We then went and met with neuro to see the results of the head u/s, and our neuro told us that Leah is "textbook" which means she is doing very well.  The shunt is still working, and she shows no sign on having any effects from her hydrocephalus.  Our final stop was to our Spina Bifida doctor, and he is very happy with how she is doing.  Her legs and feet, though not working, are nice and loose, which is important if she is going to wear braces.  Overall she is a healthy little girl and is doing amazingly well.  We were so relieved!!!  It's stressful for us to go to all these doctors appointments and hear about things that could be wrong and to get news that we don't want to hear.  I know it will happen one day, and it's such a relief to go and hear good news.

We got home at 3, just enough time for Leah to eat and take a quick nap and then we had to get to the airport for our first trip.  Leah and I went to Illinois to visit my family!  She was actually fussier in the car than on the airplane, thankfully.  She did great on the plane, fell asleep pretty much right away.  I carried her through the airport in my moby carrier, and we got a lot of smiles because she is so darn cute.  We had to get a pat-down because she couldn't go through the metal detectors.  Her shunt is controlled by a magnet, and the metal detectors could reset her pressure. 

We had a busy couple days with a lot of family wanting to come by and meet her.  She got to hang out with her 3 boy cousins and they had so much fun with her.  She was watching everyone and taking it all in.  She also got to meet my 2 grandmas.  I love that I could take her to see everyone.  She traveled really well and it was almost.... easy.  I'm sure I won't feel that way when she's 2 but traveling with a 3-month old is great. 

Now I feel like my maternity leave is really over.  Next week is my last week home, and I'll be getting us both ready for me to go back to work.  I'll also have a practice day with daycare and then it's all over. 

Here are a couple fun pictures of our trip. 

Leah loved the moby wrap!

Leah with her cousins.  As expected, getting 4 little ones to all cooperate just doesn't happen, but that's what makes it so fun!

Learning New Things

Leah is learning lots of new things everyday.  She's getting so fun!  She recently discovered her tongue and now we're starting to hear her talk and babble.  She is quite the storyteller :)  It's so much fun to watch her change and grow.  I can't believe I've already packed up several newborn outfitst that she has outgrown.  Her cries are even changing from those newborn sounds to more grown up crying, and we even saw her first tear.

My favorite time is first thing in the morning when she wakes up.  She is smiley and happy, we talk and she is so excited to see me.  Morning is also when I do a full work-up of her legs and rub vitamin E oil on her scars.  She has 3 scars - on her head, belly and back.  The oil will hopefully help minimize the scars and break up scar tissue.  She gets some good tummy time too.  I also do lotion on her legs, hips, knees and feet, and bicycle and stretch her legs.  This is to help get them ready for her to be mobile, either walking or scooting or crawling, and to keep good circulation.  Once she gets bigger, it will probably be harder for her to walk unassisted, but we still want to protect her legs from sunburn and frostbite and other injuries.  As much as we can work on her legs now will help to build feeling in them, even if she can't move them much.

Leah had a playdate with a new friend!  I met another spina bifida mom through my OB and heard about her and her baby when I was still pregnant.  Her daughter is 7 months old and was born the week before we found out about Leah's SB.  She has all of the same doctors that Leah has, so it was great to hear about what we're going to be doing in just a few months.  She was sitting on her own and has some new foot braces and is starting to bear weight on her legs.  And she was just adorable!  It gives us so much hope anytime we see another child who is doing so well. 

Our next appointment is on Monday.  She will have ultrasounds to check her shunt and her kidneys.  The doctors want to make sure her bladder is still draining fully and make sure she still doesn't need catheters.  We then see our neuro to review the head ultrasound results, and our final stop is with our Spina Bifida doctor.  It's nice that we haven't had one of these appointments for a month, and hopefully we'll keep stretching out how often we have to do them.  It gets to be such a long day for all of us, especially Leah.  She's not a great napper during the day, and going from doctor to doctor makes it even harder for her to relax.  At least this time there are no stitches to pull.  That really makes her cranky!

As everday passes, we get more comfortable with her condition.  Yes, we have a little more to think about physically with her, but so far she is meeting all of her other development milestones.  And of course I think she's getting cuter everyday!

I love being boring

Leah and I have led a pretty boring life the last couple weeks... and I love it!!!!  She's been getting on a little bit of a sleeping schedule - she starts getting fussy around 7, and is asleep by 8-8:30, waking around 5, and then sleeping until 10.  Yes, I said she sleeps until 10, but then she's up all day and only takes a few 20-30 minute cat naps during the day.  Her feeding schedule isn't as great, she's still eating every 2 hours, which makes it tough to get out of the house.  But, since it's cold and snowy I don't feel so bad about staying in the house all day. 

She has started smiling like crazy.  It's awesome to get her up in the morning and see a big grin.  I've also noticed that her eyelashes are getting very long and her eyes are deep blue.  She is one pretty little girl!  I've been trying to move her legs more often, bicycling them and rubbing them as often as I can.  I just love her teeny little feet and toes :) 

It's so nice to have other things to think about besides her spina bifida.  We still feel her head all.the.time. to check and make sure the shunt is still working.  And I bet I'm the only mom who gets excited when Leah pees on me because it means that her bladder is emptying the way it should.  The scar on her head has finally lost its scab and is healing very nicely.  Her back scar looks really good too.  We can feel where her spine is literally split down towards her tailbone.  It's a very weird feeling, the spine is totally normal until mid-lumbar and then the bones are farther away from each other than they should be. 

The biggest thing I've been stressing about lately is going back to work.  It makes me so sad to think that in just a few weeks I'll have to drop her off at daycare and be away from her for 9 hours.  We have chosen a daycare that we both really like, but I know it won't be easy.  Normally, I got so annoyed with Ty for buying Powerball tickets - now I pray every night that we hit the jackpot and everyday will be maternity leave.