NICU - Day 19

Date: December 11th
Gestational Date: 30 weeks 6 days

It snowed today!

Madelyn had a good day today. They decreased her hydrocorisone in half and her oxygen varied between the mid-20s to 30s.

Feeling the Christmas spirit!

I have enjoyed reading all the comments of support on facebook today. It seems like every time I check I have 5-20 notifications on facebook related to the pictures and statuses that my sisters, mom or I have posted. I feel grateful for all this support!

Madelyn received a letter today through volunteer services from another little girl who is likely to be one of her best friends when they get older, my college roommate Jessica's daughter. I read it aloud to her and she seemed to like it. I took lots of pictures today, but could not find my little camera for much of the day, so used the bigger one and now can't find the cord to hook it up to my computer. Some pictures will just have to wait to be posted I guess. I intend on finding that cord tomorrow but make no promises.

Dan found time to read to Madelyn today. He wanted to read to her from "The Chronicles of Narnia" but couldn't find it because I wasn't in the room at the time. He ended up reading to her from the Lego Catalog. His expression while reading the descriptions was top notch. I'm sure Madelyn enjoyed hearing about all the Legos that her father will likely buy her.

"And it costs 39.99. Plus you get 39 VIP points."

We had a lot of visitors today again. Dr. Krupp and Dr. Swanson from our time in Mother/Baby came by as well as Sarah and Erin, our nurse from Bay 2. We were a bit too loud when Dr. Krupp was in Maddie's room and were asked to quiet down. Maddie's doctor described us as "boisterous".

Dr. Krupp and Maddie

Dr. Swanson and Maddie

 Yesterday was my sister-in-law Jill's birthday. Maddie felt that she was left out on being able to wish her Aunt Jill a happy birthday, so we made her a belated sign today!

Sorry we're late!

 We have had two great nurses the last two days. One even put a bow on Maddie's head. We got a picture of her with them tonight!

Thank you ladies for all the fun!

A girl's first lip gloss is important!

"Check out my cute bow," says Maddie.

I have not slept at the Ronald McDonald House since last Thursday night. The thought of leaving Maddie the last few nights was too stressful for me. I came back tonight and this was the board on our door.

For those that do not understand what exactly Maddie has had done in the last few days, I include the explanation that my mom's sister Megan that she sent out to our family. She did such a great job explaining it (way better than I could have).

When Maddie had the first surgery and necrotic bowel was removed, it
was an emergent surgery where she would not live had they not done
that surgery. She was suffering from an infection in the intestinal
tract which can happen in the neonate population, since their
intestines are so immature. The bacterial infection was destroying the
intestinal tissue and the "dead tissue" had to be removed to prevent
the spread of decay and to allow for healing. She has been on several
antibiotics to fight the infection and they are working; her labs show
no further evidence of bacteria in her blood or urine.

The damage had been done by the bacterial infection and today's
surgery was to go in and see the extent of the damage and continue to
promote the healing, and possibly to initiate steps toward restoration
and future surgeries of repair.  Today's surgery revealed intestinal
tissue that was dead and that tissue was removed - it's likely that it
was affected at the beginning of the infection, but was not obviously
necrotic at the time of the first surgery, so it was discovered and
removed today.

Just to recap some high school anatomy for those that need a
refresher: the stomach initiates digestion and empties into the small
intestine, which there are 3 parts. First is the duodenum, the middle
part is the jejunum and the third part is the ileum. The small
intestine is where the nutrients are absorbed, including essential
vitamins and minerals. The ileum then opens up into the colon, which
there are 3 parts; the ascending colon, the transverse colon and the
descending colon, which connects to the rectum. The colon is
responsible for essential water absorption, the last part of
digestion, but mostly waste formation and removal.

Every part of the intestinal tract plays a role in digestion, and a
person cannot live without the digestive tract. However, modern
medicine has found ways to work around things and allow for life with
a few alterations. You probably all know of someone with a colostomy
or ileostomy, or have heard of it, for example. Keep in mind that
Maddie weighs significantly less than the turkeys you saw in the
stores a few weeks ago, and her intestinal tract is itty bitty teeny
tiny. These doctors are amazing! They have been able to save sections
of her small intestine and about 2/3 of her large intestine and halt
the infection thus far. For now, she will continue to get her
nutrition through the IV. Her intestines will continue to heal and
they should grow as well, as she continues to grow. Unfortunately the
parts that were removed will not grow back, but the parts that remain
should grow like they normally would. She will likely need several
surgeries to continue to monitor the status of the tissues and set up
future surgeries of repair and restoration.

Surgery was long and she tolerated it very well. she is on pain
medication and the ventilator to assist in her breathing, but not
requiring much support and doing most of the work on her own. She
recognizes Mary's voice and wraps her fingers around Mary's too. Lots
to come in the days ahead, but for today she is on her way to recovery
and feeling all the love around her.

Erin, one of our Bay 2 nurses. She's from Wisconsin.
(I previously mentioned her in the blog)