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.