All about Lucy

Lucy was born November, 23rd 2009 at 3 lbs 10 oz. We were in the NICU for almost three months or 83 days of life... Here are many things about our baby!

--Lucy was born with a 2 vessel umbilical cord, most babies have 3 vessels (2 arteries and 1 vein) required for adequate nutrition. Lucy was getting enough nutrition, but had a low birth weight for her gestational age, luckily she didn't seem to have any of the complications that come with a two vessel cord.

--Lucy was born with an extra bone in her left thumb, creating the {ninja turtle thumb} as my brother J.B. so lovingly called it. We have an appointment with a hand surgeon next month... you can see the thumb in this pic.. her ears are also taped in this pic.

--Lucy was born with a split zyphoid process.... what is that? It has to do with her sternum, being two bones instead of one...not really of significance.

--Lucy was born with adorable, yet floppy ears.. yes that is the technical term located on Lucy's

chart "Floppy" Ears... We have a surgeon looking at them in April but he doesn't pin them back until 5 years of age...

--When Lucy was born she didn't have the strength to eat by herself so they used an NG tube, a tube that goes in through the nose, into the belly. After quite a few feedings we were noticing that she would reflux, and that that reflux would come out her nose instead of her mouth..a puzzle still not solved..more on that later on....

--Lucy also had decreased function in her Right eye and right side of her face, if you'll notice, her right eye is open a lot more than her left, she couldn't close it all the way for quite a while, the eye doctor says it has to do with the 7th nerve in her face. It is getting much better each day, she is keeping it closed more. The left side has better muscle tone, so her smile is a bit lopsided, but that is getting better too...

--Because of the reoccurring reflux, and Lucy's "anomalies" {which I now call "special characteristics"} we were transferred to Primary Children's Medical Center after 3 weeks at McKay Dee.

Life Flight transfers all babies, so Lucy rode in the ambulance! I kinda thought we were going in a helicopter and was a bit excited.

--Upon entering PCMC she was put through every test...

--------swallow studies...can't swallow because she aspirates, meaning food goes into her lungs, which can cause all kinds of problems including pneumonia, or even brain damage.

--------MRI to see if the reason she can't swallow is due to something in her brain... nope all good there. We did find 4 small cysts on Lucy's brain, but they are no concern as of yet, probably looking at another MRI in a few months.

--------Ear Nose Throat Dr, came to look and see if there was a deficiency in Lucy's palate...couldn't find one with just looking, we might do a scope in a few months just to make sure her soft palate is working correctly.

In the meantime they placed an NJ tube in Lucy, a tube that goes into the nose, bypasses the stomach and goes into the jejunum the upper part of the intestine. This helped Lucy so that she didn't reflux. They also placed her on medicine for reflux, prevacid.

-------Genetics came and did chromosome studies, and gene testing on Lucy to see if she had a syndrome. If you are born with three or more abnormalities, they try to find the syndrome. It would also tell us if Chet and I could have more children with the same thing. So far so good, it all came back negative. Oh and they also asked if Chet and I could be blood related! I was appalled, then did some major searching on the internet...Chet and I are DEFINITELY NOT related by blood..They are still looking to see if Lucy could have a syndrome. We think she is fine!

And so we waited.....

----So we waited to see if the reflux would get better...It didn't

----we waited to see if she would safely pass a swallow study.... she didn't

The next option was G-Tube, and we had to wait 2 weeks for her to gain the weight in order for her to have the surgery.

The only way to feed her and bring her home was to place a gastrostomy tube or G-Tube and a nissen (a wrapping of the upper stomach, and lower esophagus to reduce reflux) Here is a pic of the G-tube.

The G-tube is the middle, this type of G-tube is called a mickey button. The scars around the belly are where they made incisions to place the tube. That little indent below the mickey button is her belly button. As many of you know the surgery went pretty well.

That is how we have been feeding her, until three weeks ago. The mickey button was leaking {milk, stomach juice..} so bad, that they had to again place the NJ tube, and let her stomach heal for a while. So back to tube in her nose!!!

So that is our LUCY!!! in a nutshell! We go to the pediatrician every two weeks to weigh her and adjust her feedings... she is up to 9 lbs 11 oz at last visit.

Update October 13th 2011

Lucy just had surgery to remove bifed thumb and also had eye muscle surgery on both eyes! She is recovering well!


UPDATE April 2011

Lucy is still primarily on G-Tube feeds and will continue to be until she can take all her calories by mouth. She successfully passed a modified barium swallow study on March 10th and is undergoing intense feeding therapy. We work with her daily to increase the amount of food she takes by mouth using a spoon. She gets a little bit better every day.

She no longer has any complications with her heart, or eyes.

She is developmentally delayed, but reaches all the baby milestones, JUST ON HER OWN TIME!
We are waiting for walking and talking! She is doing well with baby sign language and learns more signs all the time!