Prematurity Awareness Month

On June 28, 2008 my baby boy turned 7 months old. On that day, I also found out that I was pregnant.

Two weeks before Thanksgiving 2008, I found out that our little baby was a GIRL! Everyone was super excited. This double confirmed that feeling that our family would be complete after this baby.

It was the easiest pregnancy ever...until...

January 15, 2009. After a stress packed day, my water broke at 3:15 pm. Since it wasn't a flood of fluid, I just thought I had wet my pants. I had a doctor appointment with Dr. Mehta at 8:45 am the next morning.

On January 16, 2009 Dr. Mehta confirmed my worst nightmare! I was exactly 29 weeks that day and found out that 17 and a half hours earlier my water had broke. I had an ultrasound done in the clinic to determine that amount of amnotic fluid left and the ultrasound tech discovered that my baby had enlarged kidneys. I was instructed to go to Mercy Hospital in Dubuque, IA for steroids, iv fluids and find out what we would be doing from there. Dr. Berger, my primary OB/GYN met us at the hospital and told me I would be headed to University of Iowa Hospital and Clinics in Iowa City, IA because Mercy's NICU couldn't support a baby as premature as ours would be. I was loaded in an ambulance, which was my first ride in one ever, and headed to Iowa City, IA with my mom and Rich and Kris and Troy in toe.

My first belly shot 29 weeks, 3 days

I was on restricted bed rest meaning I could only be up and about for 30 minutes per day. I missed Troy and Kris more than ever and I am sure they missed me too.

We decided that we were going to name our baby girl, Rylee. Rylee had been in the breech position for pretty much the entire pregnancy. On January 28, 2009, she was very active all morning. This movement came to an abrupt stop after lunch and I had 2 fetal stress tests and a plethora of heartbeat checks. Everything looked fine.

At 7 pm, I talked to my sister for about an hour. I told her I thought I was having a few contractions but that was nothing out of the normal. Once I got off the phone with her, I felt just plain awful. I decided to shower, which didn't help. After I got dressed, I called the nurse. After 30 minutes of non-stop contractions, I was taken to labor and delivery to have an ultrasound because the doctor couldn't get the speculum open to do a sterile exam and she wanted to know what all the pressure was. As it turned out, all of Rylee's movement in the morning was her turning around. This in itself was a miracle because she hardly had an fluid to move around in.

I spiked a fever and my heartrate picked up to 170 beats/minutes. I had developed an infection which is common when there have been ruptured membranes for 14 days. It was confirmed that I would definitely be having my baby soon.

Kris and his mom, Linda, drove down to Iowa City while my sister, Carmen, took care of Troy for the night.

Rylee graced us at 1:55 am, January 29, 2009.

She weighed 2 lb, 15 oz.


She was 15 inches long.

She had apgars of 5 and 8.

She was intubated while still in the delivery room.

After 2 hours, she and I were each stabile enough to see each other. This is her first touch from me.

After 24 hours, she was extubated and put on CPAP. Kris went home and brought Troy back with him on the next day. This was Troy and Rylee's first meeting.

For 5 days, she was on and off the billi lights to ward away jaundice. Her first feeding was 1 cc of breastmilk via a feeding tube.

She had a PICC line put in a vein in her leg. She had 2 lines through her umbilical tube. There were leads stuck to her measuring her oxygen saturation and heartbeat. She also had a pulseox wrapped around her foot.

The lines in her belly were removed as well as the PICC line after about 6 days. They encouraged her to suck with the pacifier during feedings to help with her suck reflex.

At 7 days old, I got to hold her for the first time. It was only for about 15 minutes but some was better than none. She had a brain scan done that day which determined a pin point, grade 1 hemrrage.

A few days later she got to be held by her daddy.

She was moved from the open air bed to an incubator. It was quieter for her and would help keep her warmer so she didn't have to work so hard to do it herself. It was proven that the warmer babies are, the better they recover.

1 month old. She was moved into a bassinet. She was also able to wear clothes. She was also switched from CPAP high flow to regular oxygen via nasal cannula at a quarter of a liter per minute.

She was moved to Bay 4 at 5 weeks old.

5 weeks, smiling, which was probably just gas. I left her this night and got a frantic call the very next day. Kris and I rushed down to find her like this....

She had sometime developed an infection of some kind. She had IVs put in that would only last a few hours before they failed. She retained fluid like crazy. She was put back on CPAP high flow. We had come so far in six weeks to be set back for another six weeks was going to be huge. She was quarantined from everyone to help her compromised, weak immune system try to ward off these awful germs.

We had to dress in yellow gowns, gloves and masks to see her. Example, Dr. Dad above.

2 months old! She's a badger fan living in Hawkeye country.

April 3, 2009 the feeding tube was removed! This was also Rylee's due date. She was 9 weeks, 1 day old.

Happy Easter, April 12, 2009.

After 79 days, we got to take our baby girl home. April 18, 2009 was a much awaited and anticipated day!

This is Troy and Rylee's first meeting at home!

Mother's Day 2009 and I have both babies home with me. May 10, 2009.

May 19, 2009 Rylee was taken to the hospital because her pulse ox was low. She spent 2 days and was released to go home again.

Father's Day, June 21, 2009.

5 months old photo, We removed the oxygen nasal cannula just for the pictures. June 28, 2009.

June 29, 2009. We got the OK from Dr. Lindower in Iowa City to quit the continuous oxygen! Happy 5 month birthday!

6 months old. Enjoying a nice summer day outside. This also when she started sucking her thumb.

Rylee and Troy, September 6, 2009.

Rylee's baptism, September 13, 2009.

September 18, 2009 Rylee was diagnosed with Hydrocephalus, she had 12 times the normal amount of fluid on her brain. We were rushed up to the University of Wisconsin Madison's ER. After 3 hours, we were sent home to process that in 3 days, Rylee would have surgery.

September 19, 2009. Rylee's last outing before her surgery. I had to get a picture of her cute hair before it was shaved.

Waiting to go to surgery. Dr. Albright and his team would be inserting a camera in the top of her head in her soft spot area to see if the tube running between quadrant 3 and 4 was blocked. Essentially if this was the case, they could put a small hole in the thin membrane in quadrant 3 to drain the fluid. If it was open, they would have to insert a shunt from her brain to belly to drain the fluid. We didn't know which outcome it would be until she was out of survery.

Her tube from quadrant 3 to 4 was completely open. Dr. Albright inserted the shunt leaving her with a horseshoe shaped incision on the top of her head, a small incision on the back of her head and an incision on her abdomen.

She is home, healed and full of life. She is our miracle. She is our princess. She is here.

Rylee has been diagnosed with a plethora of things, some of which include, Hydrocephalus, Chronic Lung Disease, acid reflux, Grade 1 brain hemrrage, Retropathy of Prematurity, a hole in her heart, enlarged kidneys, Chromosome 6 q25.1-25.2 deletion...to name a few. She has been hospitalized 3 times since we've had her home, twice for just the common cold. We keep a continuous oxygen machine and tank in our home for those times we need it. She was 2 lb 15 oz and15 inches when she was born, 7 lb, 4 oz and 20 inches when we brought her home and today she is 12 lb, 4 oz and 23 inches long. She is on one daily medicine she takes twice a day.

We have much to be thankful for. We have many that we could never thank enough. My mom and Kris's parents have been there for us to lean on, cry to, support us, just sit with us every step of the way. We are forever greatful of the doctors and staff at the University of Iowa Hospital and Clinics, University of Wisconsin Madison Children's Hospital, Mercy Hospital of Dubuque, Southwest Health Center in Platteville, WI and Medical Associates Clinic in Platteville and Cuba City, WI and both the East side and West side clinics in Dubuque, IA. Dr. Olk, Dr. Lindower, NP Diane, Dr. Albright, Dr. White but most of all Dr. Connolly have special places in our hearts. We plan to thank the University of Iowa NICU and Ronald McDonald house by donating in the future.

The reason for Rylee's prematurity is still a mystery today. Support the March of Dimes today to help fight for premature babies.