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%

November 20, 2009

November 19, 2009

6lbs 8oz

November 16, 2009

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

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?

Breastmilk anyone?

Anyone?

*sigh*

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.

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.

November 9, 2009

Today was supposed to be the day we welcomed our baby girl, her due date! We're very grateful Charlotte is doing as well as she is, and we try to focus on the joys we wouldn't have experienced had our pregnancy gone full-term: we watched her ears turn from floppy folds of skin to standard ears, her eye lashes grow in (top first, then bottom), her finger nails transform from paper thin and barely visible to nails that will need to be filed very soon!

While there have been happy moments, the past few weeks have been dominated with other emotions. If given the opporunity to go back and time and do things differently, we would give up the ventilators, CPAP, eye surgery, and incubators in a second.

November happens to be Prematurity Awareness Month, which conveniently, is represented by the color purple - my favorite! http://marchofdimes.com/prematurity/index.asp

To all the uncomfortable and tired pregnant women - enjoy it!

We are happy to say our friends Andy and Robin Hoenisch made good use of our due date and got to meet their new baby boy, Calvin, this morning. Congrats!

Update:
Today was filled with visitors preparing us for discharge. Tomorrow I'll be able to say "we're going home tomorrow" and I can't wait. So close, yet so far away. Charlotte got a bit tired of the regular flow nipple so we're back to the slow flow. She handles it much better. We're hoping she's taking full feeds before we need to replace her feeding tube.

November 8, 2009

Charlotte simulator FAIL. No screaming and tears.

T-minus 3 days

Starting the day off on a good note!

The look of a baby girl plotting her next attempt at feeding tube freedom

Not every baby gets to have a nurse who is family (my cousin Kate)

September 20, 2009

November 8, 2009

Over the last week we've been in discussions with Dr. Wu on Charlotte's next move. Her eating has improved the last 48 hours, but she is at most taking 30% of her feeds PO (by mouth). So she still needs some sort of feeding tube, either nasogastric (above) or gastrostomy (stomach = surgery) for the foreseeable future.

But, since her feeding is really the only condition being treated at the moment, Dr. Wu felt it was possible for us to taking her home. The only catch is that we will have to be ones responsible for replacing the feeding tube should Charlotte pull it out. More on that later.

Since her last follow-up eye exam is this Wednesday we decided to stick around here until then. Come Wednesday (possibly Thursday) we'll be on the road back to Houghton.

We were conflicted about whether or not to go home with the NG tube or have the gastrostomy tube put in now. The NG tube doesn't require surgery, but being on it long-term (months) isn't good either (skin breakdown from the taping, throat irritation).

In the end we thought the gastrostomy tube represented "giving-up" to some extent and we're hoping that Charlotte quickly progresses to full feeds once we're home. So the decision was made to give her one month with the NG tube at home and after that we'll have to reevaluate and probably have the gastrostomy tube put in.

So we get to go home - good. But about that NG tube and putting it in... We got Polly up there to practice inserting and taping the tube. So easy on a doll. So not even close to simulating the sheer panic of inserting it in a writhing baby screaming bloody murder as Katie found out this afternoon.

Charlotte obliged us with live experience this afternoon when she pulled out her tube just before her 3:00 feeding. The hard/frightening part of inserting the tube is that you have to make sure it goes in her esophagus (stomach) not her trachea (lungs). Pouring milk down a tube that empties into her lungs would be very, very bad. So no pressure on Katie when she took up the tube this afternoon.

I steadied (restrained really) Charlotte's head and arms while Katie started to feed it in. Immediate screams of course. Katie had some difficulty getting it to go down because Charlotte's nose is a bit inflamed. Once she got it to the correct depth it was time to check that it was in correctly. The nurse hooked up the syringe and pulled back - nothing. She should have gotten some milk if it was in the stomach, but all that came back was air.

Charlotte had puked up her milk/vitamin earlier so it was entirely possible that Katie had inserted the tube in the stomach, but it was empty. But the nurse had Katie pull the tube back out and start over and that just about killed us. It was bad enough doing it once, but to have to do it again seemed just cruel.

After going through the ordeal all over again and still getting nothing back, we tried feeding Charlotte a little milk through the bottle and when the nurse pulled back again and tested the pH all was good. Pray to god she does not pull out that tube at home, because the both of us walked away from that experience shell shocked.

By some miracle, Charlotte managed to eat 20ml after that. Then she took 14ml at 6:00 and 15ml at 9:00.

On a lighter/positive note, Katie realized at 9:00 that we had been been using the wrong bottle nipple, probably since the hubbub at 3:00. We usually use a regular flow nipple to mix the big bottle of milk+formula and then distribute it to smaller bottles for each feed where we use the slow flow nipple. They got mixed up and we had been using the regular flow, which comes out much faster and has overwhelmed Charlie in the past. But she took it just fine and it's probably the reason she took so much at all her subsequent feeds. Lets hope she keeps it up!

November 7, 2009

Today's weight: 5 lbs 11 oz

Charlotte had two substantial, independent stools today! Apparantly it's normal for babies who are fed breast milk to stool multiple times a day. Speaking of which, as of today she has finally eaten all of the milk from August (our time in Marquette), and is on to September!

Charlotte has now been held by all of her grandparents and loves the attention.

She did pretty well with her feeds today, taking anywhere from 9 to 17 mls at all but one feed (when she took zero). Her speech therapist will be so proud come Monday. :)

November 6, 2009

I will start eating...for ONE MILLION DOLLARS!

With her recent weight gain Charlotte's feeds have been increased to 47ml every three hours. Great, more food for her not to eat.

But she spent much more time awake today and that is the first step to eating more. Dr. Wu also prescribed Zantac (for reflux) and metoclopramide (for gastric emptying) to hopefully ease her grunting and discomfort.

November 5, 2009

A little better on the feeding today, but still a long ways to go. She was definitely more awake today and that's a start.

Charlotte did manage to poop on her own without glycerin and she didn't make a peep during her bath.

5lbs 7 oz today.

Now that she is safely over the 5lb barrier we bought her car seat. Katie went to the City of Milwaukee to get the base installed. Now all we need is a baby that can go home.

November 4, 2009

It seems like we're moving backwards on the feeding and nobody can quite figure out why. She is awake but uninterested.

Today Katie and I feel like she was breathing a little faster/harder and we wonder if she is working so hard to breathe that she doesn't have enough energy to eat. We asked the nurse to watch her tonight and we'll discuss it with the doctor and the speech therapist tomorrow. Maybe she came off the cannula too soon.

Her due date is this coming Monday and we're hoping that sparks her interest.

November 3, 2009

Today's approach to feeding was to give her a break every other feed; we alternated attempting a bottle to just dumping her milk down the tube. So far, it hasn't made a difference but we'll keep trying. Tomorrow the speech therapist will visit again and reassess the situation.

Today's weight: 5 lbs 3 oz
Day of Life: 85

November 2, 2009

We gave Charlotte a chance to eat without the feeding tube today (tubeless face picture above), but she continues to be indifferent to eating.

We also tried a different bottle nipple with similar results.

Feeding is the final piece of the puzzle and it is proving to be the most difficult.

Also she does not like having the feeding tube put back in.

November 1, 2009

September 14, 2009

November 1, 2009