Wednesday, December 30, 2009

"Ralphie! I can't get up! I CAN'T GET UP!


December 30, 2009


Vitamin Return To Sender

Tuesday, December 22, 2009

December 22, 2009

All ready for her baptism

Getting good at holding on to things

When we came home we were at 17 cm, now we're at 22 cm

Opening a present from the Hoeper's

Last Wednesday Charlotte had her two month eye surgery follow-up in Marquette. It had been scheduled for two weeks ago, but the weather conspired against us at we had to push it back. She got a clean bill of health so it was all worth it.

Her feeding hasn't progressed a whole lot percentage-wise, but the gross amount she takes by bottle is increasing. She just can't quite keep up with her increasing feeds. Every once in awhile she'll take a large amount by bottle and we'll get a glimpse into what feeding like for most babies. I remember last week when she calmly took 50mls (out of 70) and it was pure bliss.

Katie consulted with Jen, Charlotte's speech therapist at Children's Hospital, and the decision has been made to have the gastronomy tube put in. Now that Charlotte is outpatient things are little more tricky, but Katie managed to get her clinic consult and surgery scheduled on back-to-back days so we won't have to take two trips. The post-surgery recovery is 2-5 days so we could be there up to a week, but after 2.5 months there this fall, a week seems luxuriously short.

Some people have asked if the g-tube is really necessary if she is gaining weight. Right now she takes, on average, about 25% of each feed from the bottle, which means about 75% is getting poured down her NG tube. The NG tube works fine, but as she gets older it will become more problematic. We can already tell that reinserting it is much more of an ordeal than it used to be. It takes a lot longer to calm her afterwords.

Also, to prevent her from pulling it out constantly, we have to keep gloves on her hands most of the time which we worry may inhibit her development. Grabbing and manipulating things is pretty central to motor skill and brain development. Also simply taking the NG tube out of her esophagus might help her turn the corner with her feeding because it won't be constantly irritating her throat causing coughs and reflux.

The g-tube isn't the ideal solution, that would be no tubes at all, but long-term it will be better for Charlotte. So back to Milwaukee.

We hope that everyone is getting settled in for a happy holiday season. Charlotte looks forward to Skyping with family back home this holiday weekend.

Friday, December 18, 2009

December 18, 2009

Send your own ElfYourself eCards

Sunday, December 13, 2009

December 13, 2009

Christmas comes early for Charlotte

Decorating Christmas cookies with Aunt Kelly

Friday, December 11, 2009

December 11, 2009

November 10, 2009

December 10, 2009

4 Months/1 Month Corrected
8lbs 5oz
19 inches

Sunday, December 6, 2009

December 6, 2009


Quickly approaching 4 months gestational age/1 month corrected age. We can't wait to take that picture this week.

Two doctor's appointments coming up. On Wednesday we travel to Marquette for another eye exam follow-up (at least it's not Milwaukee). On Thursday is Charlotte's one month appointment with the pediatrician. That will mean shots.

Charlotte continues to take more milk at feed time, but alas, it is not nearly enough, so in all probability we will make a trip back to Milwaukee soon for a gastrostomy tube. Merry Christmas Charlotte.

It's unfortunate because she is awake and alert more and more each day as you can see in the pictures above. But she prefers to just hang out and take in her surroundings and let us gavage most of her feeds.

On the bright side, the unsightly NG tube will be gone, replaced with the more discreet G-tube. That will give her cheeks a break from the tape and we will all have an unobstructed view of Charlotte's mug. Although Katie and I have become so accustomed to the NG tube that we don't notice it until we're showing pictures to someone else.

Thursday, November 26, 2009

November 26, 2009

Happy Thanksgiving!

"Thanksgiving is for the birds" screamed Charlotte.

"Ok, maybe this isn't so bad"

A few things we're thankful for this year: Charlotte, our family and friends, our jobs, Michigan Tech's Aetna health insurance, NICU staff, and the snow waiting until we were home (and still waiting).

We had planned to spend Thanksgiving with our friends Michelle and Chris but about 30 minutes before dinner they called to say Michelle was in labor. They made the turkey, stuffing, and pumpkin pie cheesecake and were kind enough to let us have some even though they weren't able to come over. The food was delicious and we hope their baby arrives healthy and soon!

It's safe to say we love having our baby home. And she seems ok with it, too.

She's gotten some quality tummy time:

And even got to talk with G&G Russell via Skype:

We're still working on her feeds, but haven't seen much change since we left the hospital. Below are her stats for the percentage of her feeds taken by mouth daily. A speech therapist is visiting us weekly, but I just think it's going to take time. This particular therapist hasn't had an infant referral in over a year, which means she's not as familiar with infants as the children-focused speech therapist who saw Charlotte in Milwaukee. That said, we're grateful she's trying new things. She introduced a medium-flow nipple on the 25th, but as you can see, it didn't help. The nipple was much firmer than the slow-flow we've been using so she had to suck much harder for the same reward.
11/12: 26.7%
11/13: 20.4%
11/14: 22.9%
11/15: 32.9%
11/16: 20.6%
11/17: 26.5%
11/18: 24.5%
11/19: 22.0%
11/20: 14.1%
11/21: 15.9%
11/22: 17.7%
11/23: 19.8%
11/24: 24.8%
11/25: 16.9%
11/26 @ 3 p.m.: 24.2%

Friday, November 20, 2009

November 20, 2009


Thursday, November 19, 2009

November 19, 2009


6lbs 8oz

Monday, November 16, 2009

November 16, 2009

"But these gloves make it harder for me to pull out my feeding tube."

We're all adjusting to the rhythm of home. Katie and I have been gotten the usual 2-3 hours of sleep each night now that we're the ones taking care of her full-time. No nurses to take over the midnight-8am stretch. Our kitchen counter has been re-purposed as a large drying rack for bottles, bottle nipples, gavages, plungers, and pump parts.

Charlotte had her first meeting with the pediatrician on Friday and was given the all clear. Her weight remains 5lbs 15oz.

She has managed to pull out her feeding tube once already, mid-feed. Katie expertly reinserted the tube in one try. No more of that hopefully.

Her feeding is up a little from her last few days in Milwaukee, but still far from where she needs to be. She seems to be awake and alert more, just not at the right time.

Other than that we are still trying to find time (and energy) to unpack and organize. Charlotte tends to demand attention from one of us, sometimes both. However, we received our moby from Adria's store so we'll be hands free now. Then we have the ever-useful and stylish Baby Bjorn once she is big enough.

Of course now I don't have any excuse for watching my soaps and being unproductive during the day. But how will I keep track of who Sammy has stabbed in the back lately on Days?

Thursday, November 12, 2009

Breastmilk anyone?



November 12, 2009


Charlotte all ready to go

Goodbye NICU!

Our car was stuffed. Here's Patrick squeezed in next to Charlotte.

After 93 days in 3 different hospitals we finally got to bring Charlotte home yesterday. We left Milwaukee a bit later than we'd wanted to because we had to wait for her eye exam, but we were pulling away from the hospital by 1 p.m. CST. We stopped twice to feed her on the way home. She traveled pretty well, but she was understandably ready to be out of her car seat about 2 hours too early (how many gestationally aged 1 day olds take an 8 hour car ride?). We arrived at about 10 p.m. EST so happy to be back in our own space.

Patrick was so excited to capture our trip home on video that he walked behind us on the way out of the hospital to record Charlotte's exit and then he also got a few shots of driving through Green Bay, entering Houghton, and of course, walking into our apartment. Gripping stuff.

We have lots to do now that we're home. About 3 months of preparations for baby crammed into as few days as possible. Oh yeah, and we also get to hang out with Charlotte all the time! Life without monitors is fantastic and I anxiously await the day we can remove her feeding tube.

Now that we're home I doubt we'll have time to update the blog daily, but we'll be sure to post photos periodically. Thank you to everyone who's been reading about Charlotte's progress and sending us your support! We are very grateful. For now, we are looking forward to forgetting about the past few months...those who've been there promise the memories/feelings fade pretty quickly.

Wednesday, November 11, 2009

November 10, 2009

Children's Hospital of Wisconsin

Ronald McDonald House

Inside RMH

Not far to walk

Downtown Milwaukee in the distance

Car seat test - 5 minutes in - 2 hrs 55 min to go.

October 10, 2009

November 10, 2009

With discharge a day away, things are really starting pick up. Prescriptions filled, home health care setup, vaccinations, and the list goes on.

Charlotte's weight was 5lbs 14 oz overnight putting her in the third percentile. However, as you can see above, she has come a long way. The occupational therapist did her assessment today and found that she is right where she should be. She gave us some good advice on aiding Charlotte's development at home.

Katie and I worked hard on packing and tying up various loose ends. After two months here we've accumulated enough stuff that we're going to be quite cozy on the ride back. Charlotte got one last bath this evening and she'll get to wear her special "going home" outfit tomorrow.

At least we hope we're going home tomorrow. We can't seem to pin anyone down on an exact time for her eye exam. We've been pressuring doctors and residents for the last week to no avail. Because of the length of our trip and losing an hour to the time zone change we really need to on the road between 10 and 11 tomorrow morning. If the ophthalmologist comes later in the morning or the afternoon we'll probably have to put off our trip until Thursday. If that happens, lord have mercy on that poor resident, because Katie is going to express her displeasure very directly and, perhaps, violently.

So hopefully tomorrow evenings update will come from Houghton.



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