Tuesday, December 28, 2010

Thumb sucking 101

Addy kind of managed to suck her thumb this evening, with somewhat disastrous results.  Allow me to assist you with the demonstration:

1) First and most importantly, use an emery board to file all of the fingernails on your left hand to sharp, jagged points.  In spite of my attempts to keep them trimmed, Addy is quite adept at maintaining a full set of wickedly sharp daggers on the ends of her fingers.

2) Open your left hand in front of your face with your palm facing toward you

3) Rotate your left thumb so that it is now pointing toward your face, keeping your palm facing you

4) Open your mouth

5) Bring your left hand toward your face, inserting your thumb into your mouth

6) Close your mouth around your thumb.  Commence sucking.

7) Slowly curl your fingers down until your claws fingernails are digging into your face.  Attempt to make a fist.

8) Ignore the thumb in your mouth and scream as you draw blood

Other than the aforementioned thumb sucking debacle, Addy continues to do very, very well.  She is definitely getting bigger and is starting to outgrow some of her newborn sized outfits.  Not that I put a whole lot of faith in its accuracy, but according to our bathroom scale she weighed just under 9lb yesterday!

Saturday, December 25, 2010

I'm dreaming of a ...

Well, holy hotdogs, Batman: Huntsville had a white Christmas this year!  Don't think this is a big deal?  Check out the history from the NWS.  (My favorite part is the official definition of white Christmas.)  It's a good thing it's a holiday weekend and 99% of businesses are closed, since the roads in the area are pretty much shut down.

Addy's first Christmas has been spent as any good Christmas should: spending every waking minute eating.  Seriously.  I think she's working on a growth spurt.

Hope that all of you have a Merry and blessed Christmas!

Thursday, December 23, 2010

Out on the town

We finally decided to take Addy out for some adventures outside the house.  Last night we went to the annual Yuletide Bassoon Concert at church.  The concert was awesome as usual, though I was hoping to hear the arrangement of "Mama Mia" that they played last year (yes, the song by Abba as played by ~20 bassoons).  Miss Sunshine let out quite a belch following the applause after the first song which no one around us seemed to notice, but Derek and I just kind of looked at each other and snickered. 

Today we went out to lunch with some of Derek's coworkers and then stopped by his office to say hi to people there.  The tricky part of taking her out right now is actually what to do with her once we're at our destination since she's still riding in the car bed and getting that thing wrangled in and out of the car is so difficult as to be impossible.  So today we brought the regular car seat in to the restaurant for her to rest in while we ate.  It may not be the best solution, but it worked for a short outing.

Tuesday, December 21, 2010

Sibling Rivalry

So far, things between Addy and her feline "siblings" seems to be settling down.  There was an initial hiccup the day we brought Addy home: she was fussy because she needed a diaper change and the cats were fussy because we'd been gone for 2 and a half weeks, so Merry decided to introduce herself with her teeth.  So far no additional encounters of the sharp and pointy kind. 

Until this morning.

Merry feels pretty strongly that babies should only maybe be seen and definitely not be heard.  During this morning's diaper change + cath, our soon-to-be-outdoor cat decided that Addy's fussing might be quieted by a swift chomp on the head.  She was quite wrong.  Fortunately, there was no bloodshed and Addy calmed down pretty quickly when I picked her up.  Unfortunately, I had diaper cream all over my fingers when Merry had this horribly wrong idea, which only added to the wrongness of the situation.

In other news, we had our first "problem cath" last night.  Marching orders when we were discharged from the NICU were to call the urologist if she has a residual of more than 40mL.  Generally it's been less than 20mL and often less than 10mL, but last night's 10PM cath was well over the 40mL limit.  My opinion is that Addy just hadn't had time to spontaneously void because she was Starvin' Marvin at 8:30 so she ate earlier than normal.  But I went ahead and called the doctor's office anyway just to be safe.  Since they haven't called back with any different instructions, I'm assuming this is a "keep an eye on it and call back if it happens again" situation.

Monday, December 20, 2010

Maybe the crib isn't such a bad place afterall...

We seem to be making progress on the whole "sleep at night in the crib" situation.  Two nights in a row now she has slept in the crib between 10pm and 2am care time, and last night she also slept in the crib from 2am to 6am.  Now if only we can get the urologist to say that a 2am cath isn't needed...

Addy continues to be a spunky, strong-willed little girl.  The plastic surgeon told us last week that we need to work on having her sleep on the back of her head (instead of having her head turned to the side when she's on her back).  Unless you actually stand over her and keep her head in the right position, she always turns it to her left.  Hand-eye coordination is also coming along, which makes feeding her just a little more interesting.  Bottles aren't so messy, but vitamin drops quickly look like war paint.

Friday, December 17, 2010

Missed Marketing Opportunity

Dear Makers of "Fruit-Like" Flavored Rx Choice Poly-Vitamin Drops With Iron:

I believe you have missed a wonderful marketing opportunity for your infant vitamin supplements.  Please consider renaming your vitamin drops "Goth Drops."  This is not only a clever and entertaining rebranding of your product, but also a more accurate description of the after-effects of feeding it to a child.  My daughter's lips remain stained black and her breath has a slight putrid stench for nearly 24 hours after consuming her vitamins.  I would be happy to consider letting her be your new spokes-baby for this marketing campaign.

Thank you for your consideration.

Tuesday, December 14, 2010

End of Shunt Pattern Baldness

Addy's hair is starting to grow back where the shunt was placed--yay!  It's long enough to actually be seen instead of just being that soft peach fuzz that can only be felt.  It's kind of hard to tell right now, but it looks like her hair may have a little red to it.

Cross your fingers:  Addy spent quite a bit of time today being awake and alert.  Hopefully she'll sleep like the baby that she is tonight :)

Monday, December 13, 2010

Longest. Road. Trip. Ever.

We had Addy's follow up appointment with the plastic surgeon this morning.  The appointment itself was fine--the surgeon is happy with how things are healing and said we just need to keep up the bandage dressings for another week or so.  GETTING to the appointment was a different story.  Traffic was crazy backed up on the interstate due to the inch of snow that fell in Nashville overnight.  It took 2 hours to cover 2.5 miles on I-40 this morning.  Oy!

Saturday, December 11, 2010

What do you mean there's no catheter supplies in the order?

I got a call yesterday afternoon from the medical supply company to confirm the order for wound care supplies yesterday, but they didn't have any info on the (equally important) catheter supplies.  So I had to call the urologist to find out where the clog in the system was at.  Not a big deal, but I hadn't expected to need to remind them that if they want us to keep cathing her then we need more than the 2 weeks worth of supplies that we got from the NICU at discharge.

Other than that, things are still going great.  Addy is incredibly patient with us as we become more adept at her care routine. The big accomplishment this afternoon was to get the remaining non-baby things moved out of the nursery so that Aunt Katie and Grandma can finish painting for us!

Friday, December 10, 2010


Addy continues to do really well at home, in spite of the annoying restrictions from the plastic surgeons and the neonatologists (she can be on her back and sides, but for no more than 2 hours at a time, and she can't sleep on her tummy at home because of the risk of SIDS, and she doesn't like to lay on her right side at all due to the shunt but she needs to lay on that side at least some so that her skull doesn't get all misshapen and her neck muscles don't get uneven).  Hopefully after next week's appointment with plastics we'll be able to let her sleep for longer without turning her. 

We're still perfecting the care routine, but we have each managed to do the diaper + cath thing solo at least once now.  Addy definitely enjoys having a second person there to entertain her, but it isn't a requirement anymore.  We have to continue with cathing every 4 hours until at least her first SB clinic appointment in January, but so far she's been having more wet diapers than she was having in the NICU.  I'm hoping for a bit of a reprieve on the cath schedule, but we'll keep doing what ever needs to be done to keep her healthy.

BUT she has started acting like she's teething!  She chews on her bottles and paci (and your finger if you let her), drools a fair bit of her milk down her chin when she eats, and Aunt Katie swears that she could feel a tooth getting ready to pop through when Addy was chewing on her finger.  I know that's not all of the symptoms of a teething baby and that she's about 5 months ahead of schedule on that milestone, but it has made for a couple of pretty messy days of feeding!

Wednesday, December 8, 2010

Last time I checked, tar was not a fruit

Addy has 2 medications that she has to take.  One is amoxicillin (to prevent UTI's) and the other is a multivitamin.  The amoxacillin is bubblegum flavored and Addy loves it.  The vitamin drops claim to be fruit flavored, but they look, smell, and stain more like tar than any fruit I've ever come across, and Addy is not at all a fan of them.

If only we had a "scratch 'n sniff" blog and then you, too, could enjoy the eau de tar...

Tuesday, December 7, 2010

Very Merry Unbirthday, Addy

Today was supposed to be Addy's birthday, but instead it's her almost-3-weeks-old-day!  To celebrate, she had her first pediatrician's appointment and got a thumbs up from the doctor.

We're still working on getting all of our routines worked out to where they're both faster and can be done by one person (instead of the current team of 3!) and we're also working on this whole needing to snuggle during the day time vs night time thing.

Monday, December 6, 2010

Day time is for sleeping, Night time is for being awake

We did pretty well yesterday, especially thanks to Aunt Katie who got in last night.  So far Addy seems to be confused as to when sleeping vs. awake time is supposed to be, but we're going to work on that :)

Sunday, December 5, 2010

This little baby went "wee wee wee wee" all the way home!

Addy got to come home yesterday afternoon--hooray!  (For the record, she was actually pretty quiet for the car ride.)  Updates are a little more challenging to write while snuggling a small baby, but we'll manage somehow.

A big "Thank you" shout out goes to our saintly neighbors who took care of our 3 crazy cats and their many issues while we were gone, and to the welcome committee for the balloons and cake!

Friday, December 3, 2010

Addy gets a big girl bed

Today was more good news from Addy's nurse--"soon" is almost here!  We spent the day going through lots of pre-discharge teaching things, including how to install the car bed car seat so that Addy can come home with us.  She wasn't real happy with testing out the car bed in her NICU room, but I think that was mostly because she was hungry.

And since she's almost graduating from the NICU, Addy gets to move up from a Giraffe Bed to an actual (rather institutional looking) crib.  Scary side note: the warning on the bed claims that the max weight limit for the crib is 350lb, so no fat babies allowed!

Thursday, December 2, 2010

Girls' Day In

Today was special Mommy + Addy bonding day because poor Daddy's allergies were acting up.  Mostly it means that I got to do care time all by myself (and that I didn't have to share snuggle time!)  It also means that Daddy had time to upload some more pictures :)

Addy's feeding was less than stellar most of the day so we're waiting on that to rebound before we start pestering the doctors about when we get to go home.  She does eat, but not as much as the doctors would like and not as much as she was eating a few days ago.  Hopefully we don't have to go back to the NG tube, but we'll do what needs to be done to get her back to the voracious eating machine that she was before her shunt went in.

Wednesday, December 1, 2010

Could someone please define "soon" for me??

Addy continues to do awesome post-surgery.  She was completely off the pain meds this morning, but mostly because her IV in her foot had gone kaput and they had trouble finding another vein to stick.  The nurse got an order for some oral pain meds in case they're needed, but to my knowledge they weren't needed all day.  Food is still a pretty high priority for Miss Sunshine and fortunately she's back to her "on demand" feeding schedule!  She slept through most of a visit from Grandma and Grandpa Gottlieb this afternoon.  Thankfully she's super cute, so they didn't mind watching her saw logs while snuggling with Mommy.

Derek had a chance today to meet a family with a 1-year old daughter who was also born with Spina Bifida.  They are also from the Huntsville area, so we're looking forward to getting to know them better in the future.  Interestingly, when the doctor was introducing everyone, he made an off-handed comment that we would be discharged "soon," which is the closest we've been able to get to an actual ETD (estimated time of departure) since the false alarm on Monday.  If only we could get someone to actually define "soon" for us...

Tuesday, November 30, 2010

Shunt was successful!

Addy was super cranky this morning because of the food situation.  Fortunately, some snuggles with Mommy helped a little bit.  The shunt placement went well.  It's on the right side of her head and they had to shave her lovely long hair on that side as part of the surgery (they saved her hair for us, which entertained me immensely).  When we left this evening she was resting mostly comfortably thanks to some really good pain meds, and woke up every once in a while to remember that she was kind of hungry.

No one really wants to talk about when we're going home yet.  My best guess is another day or two--depending on how she does with weaning off the pain meds and how her feedings go over the next 24 hours.  Just click your heels together 3 times and say, "There's no place like home..."

Another good day

Other than a little bit of whip-lash over the "going home v. not going home" yesterday morning, Addy had another really good day.  She got a good, long nap in the afternoon.  She slept through her 3:00 care time and didn't even wake up enough to want her bottle.  Derek and I left around 5, so hopefully she had some more to eat at some point--no more food after midnight in preparation for today's surgery!

Good thoughts and prayers are especially appreciated today with Addy's shunt surgery happening.  The doctors are confident that it will go well and that she'll have a good, quick recovery since she did so well with her back surgery, but we're still a little nervous!

Monday, November 29, 2010

Change of plans

Strike that last one. Sounds like maybe no one actually talked to neurology before telling the nurse to call us about working on discharge papers for tomorrow. So Addy won't be discharged tomorrow but will in fact be going in for shunt surgery to help manage her enlarged ventricles. Best guess as far as neuro goes is that she may be discharged Wednesday, but I will it until we've actually been discharged by everyone before I'll be confident of that. We'll just have to wait and see how it goes and keep taking things one day at a time. They won't have any clue when the surgery will actually be until tomorrow morning when they make the OR schedule for the day, and that's probably a rough estimate anyway depending on what other emergencies crop up and whether earlier surgeries go quicker or take longer than expected. We'll continue to keep everyone int the loop.

Homeward bound!

We got a call from Addy's day nurse--she's working on discharge papers so we can go home tomorrow (Tuesday).  Yay!

Sunday, November 28, 2010

Still crossing our fingers...

Today was a pretty quiet day.  We had one more visit with Aunt Katie, Uncle Chris, and Uncle James in the morning before they headed back to IL.  Around 4, the day nurse stopped in to say that the sonogram tech would be coming by shortly to go ahead and do the scan of Addy's ventricles.  (Monday was apparently already over-booked, so the tech was trying to free up her schedule by doing some of the scans on Sunday afternoon.)  We haven't heard yet what the verdict is, but we're keeping our fingers crossed and should hear either way in the morning.  If she needs a shunt, that's fine and let's get it taken care of.  But if she doesn't, let's go home!

The only big change for today was that we finally put clothes on Miss Addy!  She looks really cute, but is absolutely swimming in the sleeper sack that we put on her.

Saturday, November 27, 2010

Look, Ma, no tubes!

Addy is now free of her NG tube and her IV--hooray!  She still has all of the leads hooked up that monitor her pulse, breathing, and O2 sats, but those don't really get in the way of anything.  She graduated to "on demand" feeding, which means that she gets to eat as much as she wants, whenever she wants it.  And, now that she's no longer confined to staying on her tummy, we can even put clothes on her.  Poor kid has had nothing but mostly naked baby pictures so far!

Addy also has a very healthy set of lungs and is not shy about telling us that her incisions are still pretty tender.  They're coming along really well, but it's going to be a little while before they're completely healed up.

We also had 3 more visitors today: Aunt Katie and Uncles Chris and James came down from IL to see us.  Derek had seen them at Katie and Chris' wedding, but I hadn't seen them in person since April so I especially enjoyed getting to see them.

Friday, November 26, 2010

Who needs shopping when you have Addy?

Two updates for today:
1)  Addy had a hearing test and passed, but needs to come back in about 6 months to repeat.  I have no idea what they did to test the hearing in a week-old baby, but she definitely looks around and tries to focus on the source of a voice when we talk to her.

2)  She also has graduated to "ad lib" feeding, which means that she's allowed to eat as much as she wants from a bottle as long as it's at least 40mL and no more than 80mL at each care time.  (For reference 60mL = 2oz, and care time is every 3 hours.)  I hope that if she keeps that up for several feedings, they'll remove the NG tube from her nose--yay!

There was more snuggle time today, which was quite awesome.  Tomorrow she gets to start spending some time on her back and sides, which means (among other things) that we get to try nursing.  Hopefully she's less messy about that than she is with the bottle...

Slight right onto the I-65 on ramp. Then, your destination will be on the right.

Stupid smart phone and your stupid directions to Cracker Barrel.  Yes, the restaurant is just to the right of the interstate on ramp.  No, the entrance to the parking lot is not accessed by getting onto the interstate on ramp.

Thursday, November 25, 2010

Happy Thanksgiving!

We had a fabulous Thanksgiving today!  We spent most of the day just hanging out with Addy and practicing taking care of her (under the watchful eye of her day nurse, Kat).  We even both got to have snuggle time with her this afternoon, but I think I stole the "good" time and poor Derek got the slightly-cranky-starting-to-wake-up-and-remember-that-it's-almost-dinner-time time...

Hope you all had a happy Turkey Day!

Proud Papa

Wednesday, November 24, 2010

Happy 1 week birthday!

So we got a bunch of good news when we talked to her nurse first thing this morning. With any luck, this will be her last iv unless they have to do any more surgery before she's discharged. They'll keep giving her antibiotics through it a few times a day, but when it starts acting up they'll just pull it and won't have to put in a new one.

Her feeds have continued to go well and she's clearly motivated to eat even if it is hard work. She takes a bit of prodding because she like to go to sleep after she starts feeling satisfied, but we were able to get her to finish her whole bottle this morning and didn't have to give and via ng tube!

The nurse also told us that starting Saturday we'll be able to put her on her side and back for a couple hours at a time. Should help feeding go a bit better and be a bit more comfy for her we hope. And pretty soon we'll be able to hold her a little as long as she stays on her belly even if it is a bit awkward at this point.

There's all sorts of talk about gearing us up to take care of her once she goes home, so I'll take that as a good sign. We've been helping with care time since pretty early on (e.g., taking her temp, helping change her dirty diapers, feeding her via ng tube or bottle). This morning the nurse walked Amanda through cathing her and she did awesome in spite of the added challenge of doing it while she's laying on her belly. They're also talking about changing her dressings and teaching us to do it, which sounds like she may actually get to take her home before those are all the way healed. At this point, I guess it's mainly going to come down to how her hydrocephalus progresses and how the ultrasound looks next Monday.

Tuesday, November 23, 2010

It's bottle time!

She's doing well again today. They've weaned her all the way off iv fluids and she's getting hopefully all she needs from her feeds. There's also been some discussion of taking out her iv, but it will depend on how much longer they want to keep giving her antibiotics.

And speaking of feeds, she got to have her first bottle feed today! It's not quite the most convenient thing in the world for her (you try drinking while laying on your belly with your head twisted around to the side and let me know how it goes), but I think she did really well all things considered. They keep slowly working up how much she gets fed at each feeding and she seems to be taking it well. I couldn't get her to drink the whole bottle but she did pretty well for her first time and we gave her the remainder through her ng tube. Second bottle didn't go nearly as well, but they'd also just finished removing the last iv she had in her scalp and putting in a new one, so she was more than a little fussy and worn out by the time Amanda got to try feeding her.

She managed to poop all over the tummy part of her dressings on her belly, so plastics had to come over and change her bandages and check things out. So far the wounds on her sides seem to be healing well and her back looks great. They should heal well over the next couple of weeks, but they're not talking about any estimates on when she might be discharged just yet.

More visitors appeared today in the form of grandma Peggy and auntie Sarah (again).

We also trekked out to Target again today to pick up some cute receiving blankets for her bed and some lullaby CDs since one of her nurses said she'd requested a cd player for her room to help soothe her. It can also be really helpful once we take her home because she'll get used to all of the noises of the NICU and might have trouble sleeping when we take her to a quiet home. But with any luck having the same music both places will help with that.

Monday, November 22, 2010

An occupational therapist for a 5 day old?

We've had some interesting visitors today for miss Addy. This morning the sono tech came through to take a bunch of measurements and pictures of the ventricles in her head. So far, they're a little enlarged, but not bad enough to schedule surgery to put in a shunt yet. They'll keep tabs on her progress and take daily measurements of the circumference of her head and have a followup sono scheduled for next week. Not much to do there but wait and see whether she'll need that surgery done before they discharge her or not.

She also had visits from a physical therapist and an occupational therapist who came by to do what they could to evaluate her strength and range of motion. They were a little limited in what they could do with the bandages on her back, sides, and legs and not wanting to move any of those much, but they gave us some exercises we could do to help keep her flexibility in her ankles and some infant massage stuff we could try.

Feeds are still going well so they're working on weaning her off of iv fluids and with any luck they'll start bottle feeding her soon.

Sunday, November 21, 2010

No more pain meds

They were able to wean her all the way off pain meds. They held one of her feeds but otherwise she's been doing pretty well with those. When they feed her through the ng tube, they also let her work on a paci to help associate that warm full feeling with sucking. And something no sane person would normally be excited about but new parents get thrilled over... he had a huge dirty diaper that she spent quite a while working up (at least based on her facial expressions).

We're doing a little better today since we had the chance to run home and grab a couple weeks worth of clothes to wear. But it's definitely good to be back in Nashville where we can be with her.

Saturday, November 20, 2010

So many visitors, so little time

Addy's had a pretty good day today. Lots and lots of visitors have come to see her including grandpa and grandma Gottlieb, aunties Rachel and Sarah, and pastor Robin. They've started weaning her off pain meds and she seems to be doing really well with it so far. She was probably the most awake that we've seen her so far and spent a fair bit of time looking around. We also got to have our first real feed tonight even if it meant getting an ng tube put in (owie!). Seemed to go pretty well, but we'll just have to wait and see how much she actually digests when it's time for the next feeding to see how she's doing.

In other news, Amanda was actually discharged today, so she'll get to start "sleeping" in a real bed again without nurses coming in to wake her up to ask her how she's doing. We'll be heading home for a quick trip tonight to grab all the stuff we didn't bring since we'd only planned on an overnight trip with no baby to bring home just yet (e.g., clothes for us, a car seat, cameras, etc).

Friday, November 19, 2010


I don't think I've shared this with everyone, but if I have then blame it on my sleep schedule. I just wanted to share the web link where I'm uploading pictures as I'm able. You should be able to see all the photos I'm taking at:


Addy's doing really well recovering from her surgery so far. Plastics was there when we went to visit this morning to change the dressing on her legs and take out the drain. If all goes well, they'll try to feed her later today and hopefully we'll be able to take her home in a couple of weeks.

Thursday, November 18, 2010

Back surgery

Baby Adelaide had her surgery earlier today and talking to the neurosurgeon it
sounded like everything went well. They had to call in plastics to handle the skin,
but she seems to be doing well. Hopefully she'll be moved to the NICU soon and
we'll get to go see her.

Wednesday, November 17, 2010


Surprise! Adelaide was born at Vanderbilt at 1:01 pm today. 6 lbs 11 oz at 36 weeks 1 day for those of you that like numbers. (I'm back filling posts now that things have calmed down slightly, so i'll go ahead and add that she was 19 1/2 inches since they didn't actually measure her length at birth.) Guess she wanted a November birthday like her folks. We were here for our last visit before delivery and were walking to the car to leave when Amanda's water broke so we went right back in. Mom and baby are both doing well. I'll try to keep people posted as I know more.

Friday, November 5, 2010

Little Miss Sunshine

Let's be honest here.  You're reading this because you want to hear about how Little Miss Sunshine is doing.  My feelings aren't hurt.  Here's the short version:

We're very excited to welcome a baby girl to our family in early December. She has been diagnosed with Spina Bifida (myelomeningocele) and hydrocephalus.  We won't know what all is in store until after she's born, but so far all reports point to a favorable prognosis.  Check out the Spina Bifida Association website (www.spinabifidaassociation.org) for more info about Spina Bifida.  For right now we're keeping busy counting down to her arrival (32 short days!) and getting the house ready.

The First Post

We decided that it would be a good idea to share information, updates, etc about our now-growing family.  Email is fine and all, but I always seem to accidentally leave someone off, and not everyone likes getting mass emails...  And some day I will jump off the cliff like the rest of the lemmings and join FaceBook, but I just can't bring myself to go there quite yet.

Hence, the blog.