Tuesday, October 30, 2012

Roller Coaster Ride

Katie is up to 970 grams (2 pounds, 2 ounces)!

Everyone who has been on this journey have told us that being in the NICU, she will have her good days and her bad days. I believed them, but until recently, it was hard to really understand the intensity of these ups and downs.

Sunday they were able to re-intubate her with a larger breathing tube. Shortly after, they pulled some green residual from her feeding tube, and stopped her feedings. They think her body stopped digesting due to the stress of getting the new breathing tube.

She stayed off feedings for 24 hours. They started her back at 1.2cc/ml every 3 hours earlier this afternoon. We're hoping she can quickly work her way back up to where she stopped.

On October 15, they did a head ultrasound and found a grade 1 bleed on the right side of her brain. This is common in babies of her size, and the doctors weren't too worried. They did a repeat ultrasound yesterday evening and it had gotten slightly larger. The doctor says it is now a grade 2 bleed. Grades 1 & 2 will usually go away on their own, unless they progress further. The next ultrasound is scheduled for Monday.

There's no immediate emergency, but please, keep praying for her. We appreciate everyone's thoughts!

Here's a picture of her sleeping nice and comfortable:

And another of her toes!

Sunday, October 28, 2012

Just Visited Katie and..

They're increasing her to 4cc/ml :).

She's also up to 930 grams.. That's TWO POUNDS!

She also has an air leak which is causing the oxygen they're giving her to not be as effective (because its not making it all the way to her lungs). They're going to monitor her and most likely change her tubes sometime soon. The nurse says its common that once the babies start growing, they grow out of the tubes.

Oh, and here's a pic of her foot, for mom :P.

Nom Nom Nom..

As of last night, Katie is up to 900 grams (1 pound, 15 ounces).

They started with a tiny feeding (1cc/ml) on Friday at 2:00pm. When they checked what was left in her belly at 5:00pm.. It was gone! They continued the 1cc/ml (every 3 hours) feedings until yesterday afternoon, when they doubled her dosage. She seems to be tolerating the feelings very well!

Katie really prefers to be on her stomach. That position helps her breathe better. It looks much more comfortable, don't you think?

Friday, October 26, 2012

Small update.. With a pic :)

The barium test went well yesterday! They were able to place the feeding tube with no problems. That means they'll most likely try to feed her today! As long as the remnant barium moves on her x-rays, they'll start with another tiny feed to test if her system is ready to start digesting. Yay!!

I don't usually like to Instagram photos, but this one looks really good:

Wednesday, October 24, 2012

Quick Update!

As of this morning, Katie is up to 820 grams (1 pound, 13 ounces). They have moved her off the oscillator and back to the ventilator. Our last update today (around 1pm), she was down to 28% oxygen (normal air we all breathe is 21%).

They're taking her down to get a barium x-ray so they can see what is going on in her esophagus. As long as everything is where it's supposed to be, they'll attempt to put her feeding tube back in, and presumably start feedings shortly afterwards. It's been a little over a week since their last attempt, so we're hoping that her digestive system is ready for food now!

She was having some problems keeping her urine output regulated, but over the last two days, she has been peeing like normal. We have a theory that she saves it up just to keep us on our toes!

Sunday, October 21, 2012

Twenty-Two Days!

As of 10.19.12 (her last weigh-in), Katie is up to 770 grams (about 1 pound, 11 ounces). Again, no idea how much of that is just fluid, but I'll take it either way!

I can't believe it's already been three weeks. I started back to work on Tuesday. It's hard to wake up in the morning, and to not get that 2pm nap I had gotten used to! That and going straight to the hospital after work to visit Katie, going home to eat, clean, and shower.. I'm exhausted. I did get to rest this weekend, which was very nice.

They attempted a trophic feeding on Tuesday, but her stomach wasn't ready to digest yet. The doctors said they were going to wait a few days and try again, but her NG tube (her feeding tube) came out Friday night, and they are waiting a few days before they try to put it back in.

She was moved from the ventilator back to the oscillator also on Tuesday, and is doing well on it. Until of course, the doctors/nurses do their exams, then she throws a fit and makes her oxygen saturation drop, which causes the nurses to have to raise her oxygen concentration. She recovers quickly and gets weaned back down, though. She really doesn't like people messing with her!

The nurses noticed a bit of blood when they suctioned her breathing tube, which means she has some blood in her lungs. It sounds much worse than it is. What happens is the small capillaries in her lungs get overworked, and burst. It's very common in babies her size. They're monitoring her to see if it gets any worse, and to see what action they need to take.

She has had a couple of episodes where her urine output has decreased to nearly nothing. They gave her fluids and diuretics, which fixed that issue. She's also pooped (meconium) a few more times, once when I was in the room. The nurse had just put a new diaper under her butt, and was getting a wipe, when she dirtied the new diaper.. she's already a little brat!

That's all of an update we have for y'all now. Sorry there was such a delay between posts.. I've been pretty busy lately!

Monday, October 15, 2012

Tiny Baby! (pic only)

Here's a pic of Katie wearing Ron's wedding band. We're hoping to make a series of similar pictures, so one day we can look back and remember just how tiny she was :).

Friday, October 12, 2012

(Almost) Two Weeks Old!

About five more hours, and Katie will be two weeks old! I have mixed feelings on how quickly time seems to have already gone by.

Katie is up to 720 grams (about 1 pound, 9 ounces). I'm not sure how much of that is fluid weight, and how much is her actually growing.. but either way, it sounds great! This evening the ventilator was set around 45, but she was letting it do all the work! She had a interesting morning, with an x-ray and some blood work being done. The doctors say that, based on the x-rays, it looks like the poof of air in her stomach is moving down, and she's having more soiled diapers (which is great!).

More news: the doctors think she has a tear in her larynx (which could be the "airway anomaly" the doctors at Baptist found). They say that they are giving it some time to heal, and then they will feel better about feeding her. Hopefully she'll be a little pig and will start to grow :).

We knew Katie had been opening her eyes just a sliver, even at Baptist, but we hadn't ever gotten a picture of it.. until today! She struggles so hard to get the right muscles working to get her eyes open, it's adorable. She always scrunches up her eyebrows and wrinkles her forehead before she manages to open her eyes.

Taking a peek!

Wednesday, October 10, 2012

Welcome to LeBonheur!

Katie is all moved in at LeBonheur! I was a bit nervous about the actual moving process, but the Pedi-Flite team (After hearing the name of the transport team, I had to ask whether she was being flown.. but that's just the name. She was moved via ambulance.) made everything seamless. The carrier she was on looks a bit scary, but it had all the machines on it that she was hooked up to, so she never had to be without any of it.

If you've never been to LeBonheur before, it's a maze! From parking to walking onto her floor, I take 3 elevators and go through 4 buildings. They have helpful stickers on the floor to tell you how to get to the children's hospital, which I was thankful for.

Once they got her moved, and while she was getting used to her new room/hooked up to her machines, I was shown around the floor (where the restrooms, showers, lactation rooms, etc were located) and introduced to her doctors and nurses. They let me know that as long as I'm making Katie food, I get meal cards. Her room has two convertible chairs so we can sleep in the room. We can have drinks in the room, but no food. There's a family room where we can eat our meals if we choose to stay at the hospital for any time.

Katie's room at LeBonheur
Now, for some news! They moved her back to the ventilator. When I called this morning, they had her on 25% oxygen, and 30 breaths per minute. She was breathing over the machine at around 60 breaths. Also, on Monday, they were able to get a smaller tube down into her stomach! They put a couple puffs of air into her stomach, and are X-raying periodically to see if it passes. The first puff disappeared overnight, and they're currently tracking the second puff.

Once they make sure that the puffs of air are making their way through her system, they can start to feed her. Which will be great news, not only for her growing body, but also for our quickly diminishing freezer space!

Mom has been asking for pictures of Katie's feet, so Mom, these pics are for you:

Friday, October 5, 2012

Katherine Louise Stowe: A Birth Story

Katie's First Picture - 09.29.12

Not quite the way I expected, but miss Katherine Louise "Katie" Stowe has arrived. September 29, 3:28am, 1 pound, 3 ounces, 12 inches. We've got quite the road ahead.


I woke up Tuesday, September 25th, with some cramps and bleeding that I later found out were contractions (found out I may have an incompetent cervix.. I'll let you google that). Went immediately to labor & delivery, where a cervical check showed I was dilating and had a bulging sac (they couldn't tell how dilated I was, but the best estimate was 9cm.. which we later found out was more like 3cm). I was admitted and started on a medicine (magnesium sulfate.. made ALL my muscles work at around 20% efficiency, which was great for my uterus, but not so great for breathing or focusing my eyes) to stop labor. I stayed on the medicine for two days while they also gave me a steroid to help Katie's lungs develop once she got here. I was taken off the magnesium sulfate on Thursday morning and put on another (procardia) to keep any contractions at bay. After a day of no contractions, I was moved to a different room. Early Saturday morning I started having some powerful contractions, despite the procardia. A cervical check showed that I was completely effaced and ready to push. Minutes later I was in a room delivering Katie. I didn't plan on having an unmedicated delivery.. but Katie had her own ideas.


She's currently in the NICU at Baptist Memorial Women's East. Her heartrate and blood pressure are great. She started off on a ventilator (but had trouble because of an anomaly in her trachea), and was moved to an oscillator early October 3rd because her PH levels weren't where the doctors liked. She has been doing well on it so far. As of her weigh-in yesterday, she is up to 1 pound, 8 ounces.. but as the doctors put it, her weight will fluctuate a lot during the beginning (but it is still comforting to hear!).


They tried putting a line down her yesterday for feeding, and they discovered what the doctors think is TEF/EA (Tracheal Esophageal Fistula and Esophageal Atresia. It's kinda complicated.. but fixable via surgery). She is still too tiny to go through the surgery, so they're most likely going to put a feeding tube into her stomach soon, to help her gain weight quickly. They're moving her to LeBonheur's Children's Hospital on Monday, where she'll have the specialized care she needs.