Friday, September 23, 2011

What a Whirlwind!

Wow! I cannot it has been four weeks since we first met our sweet baby girl. And I have pretty much missed the entire month of September.

Miss Ryleigh Katherine Rowe joined our family at 8 am on Friday, August 26th. Bright and early that morning Ron and I got up and headed to St. Mary's in St Louis for our scheduled c section. Actually, since it was about 5 am when we rolled out of the Holiday Inn it wasn't so "bright" but it was damn early.

Dr. Daddy, scrubbing in for surgery. 
He did a great job making me laugh because I was so nervous. :-)

Me in my sexy pre-surgery get-up.

Everything went pretty much as scheduled and I headed to the OR just before 7:30 for surgery. Ryleigh came out and sneezed right on the mask of one of the doctors. No need to worry if she was breathing :-) She was whisked away to a side room for measurements and vitals and to wrap her up to protect the lesion on her back. She was 7 lbs 9 ozs and 19 inches long. Daddy took a couple pictures and brought them back to me, as I was getting my belly put back together. Soon I was in the recovery room and the transport team brought Ryleigh in so I could see her and hold her for a few minutes before she went to Cardinal Glennon.
Ryleigh Katherine Rowe

 Mommy meeting Ryleigh for the first time.

 Mommy, Daddy and Ryleigh

While I was at one hospital recovering from surgery, Ryleigh was getting ready for her surgery at CG. The afternoon of her birth she underwent surgery to repair the myelomeningocele on her back. Her surgery went well and she was back in her NICU room recovering by early evening. I look at the pictures of my little girl in those first couple days and I do not even recognize the baby I know now. She was pretty swollen from the fluids and meds they gave her during surgery. She kind of looked like a Cabbage Patch Kid. Saturday I was able to get a "hall pass" to come over to the hospital to see my little one for a bit. She still had a breathing tube and was pretty sedated from all the pain medicine. It was hard for mommy to see. Sunday by the time I came over to see her again she was off all oxygen and breathing well on her own. She had even started to eat from a bottle. An accomplishment that surprised many of the medical staff...they thought she would be on a feeding tube for at least a while.

On September 5th, Ryleigh had another neurosurgery to place a shunt to drain any excess fluid and pressure in her brain. Her recovery from this surgery was a lot easier for her. But it came with a pretty bad haircut courtesy of Dr. Elbabaa. They had to shave one side of my baby girls head. All her long hair...gone. :-( He told us that it is a common joke that neurosurgeons give the worst, most expensive haircuts you can get. After just a few days Ryleigh was able to lay on the right side of her head, where the shunt is, with no problems. She incision is healing really well and her hair is starting to grow back little by little. 

Because of the myelo surgery she has had to stay on her belly for these first few weeks to allow her back to heal. Last Friday was the three week mark. The plastic surgeon has said four weeks from the beginning, to allow enough time for her incision to fully heal. In the last couple days we have gotten the green light to go ahead and put little miss on her sides and back for short periods of time. She was so funny when we laid her on her back for the first time. She was a little disoriented at first, but then really seemed to like being able to look around. and she didn't show any signs that her incision was hurting her at all. Yay! Our attending neonatalogist has said that if things keep going well we could be home by early next week!
Our little chubber on her side for the first time. Can you tell she is a good eater?
She's tipping the scale at nearly 10 pounds now.

First time on her back, looking at her daddy.
She has one small incision on her belly from the shunt tubing. It goes down to drain any excess fluid into her abdomen.

For now we spend about 12 hours a day in Ryleigh's room at Cardinal Glennon. We use terms like "neuro" and "plastics." We know what all the beeps are on the monitors around the hall. We have come to love our kooky favorite nurse Joanne, and she has been hooking us up with some free supplies for when we go home. I wear sweatpants out in public more often than I care to admit. We have met a lot of good people at the Ronald McDonald House. We have met other parents in better and worse situations than ours. There are actually two other babies in the NICU right now with the same condition as Ryleigh. One underwent the prenatal surgery that we had considered thru the Fetal Care Institute. The baby ended up coming early and had some of the complications of being premature that we did not have to worry about with Ryleigh being healthy and full term. While their case is different from ours; being able to meet this family and hear their experience really confirmed what Ron and I felt: that we made the right decision to forgo the prenatal surgery. We have no regrets at all about our decision.

Our Ryleigh is such a good baby. For all she's been through already she doesn't cry much, eats well and sleeps well. ...Of course I just jinxed us. Just like any other newborn, she cries when she's hungry or when she needs her pants changed. Being on her belly, she wears her diapers backwards, Kris Kross style. Let me tell you backward diapering is a challenge for rookie parents. We will be experts at it when we get to put them on the normal way! She is so tough and I am so proud to be her mommy. We are looking forward to so many fun times with our little girl.

And just a few more pics of our sweet girl:
Mommy and sweet Ryleigh the first time I got to hold her.

Daddy holding little bug for the first time.

One of mommy's favorite pics.

Another mommy & Ryleigh pic.

Close-up baby face.

Cardinal Glennon NICU, Pacifiers as big as your head.

Everything is going great. We are cruising toward being paroled early next week. We are SO looking forward to getting our little bug home and having her all to ourselves. ...Remind me I said that when I am up feeding her at 4 am. ;-) I was starting to get a little nervous about going home and having to do everything ourselves. But the three of us make a pretty good team and I am so excited. Things have been going really well for us the last week or two. Ron got a job, found out today that he passed the Indiana Bar and we are getting ready to take our Rymonster home to her purple room. Today is a great day! Hopefully it won't be another four weeks before I post an update. 

One last thing to share. A real tear-jerker of a video Ron took the first time I got to hold Ryleigh. You may have seen it on Facebook already. 

Thanks for all the love, support, kind words, thoughts and prayers. It has meant so much to us through out these first few weeks. 

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