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Lily's Story: A Micro-Preemie's First Year

February 2007 - The Long Wisconsin Winter under Quarantine
Prior Segment: January 2007 - Beginning a New Year

(February 2, 2007): It is adorable to see Lily try and form words. Mostly it is still "Hello" and "I love you." She is an absolute beauty. 
Lily is now 6 months by birth, and 3 months adjusted age. Her doctor is extremely happy that she is so talkative. We have been told to cut back on her milk intact, as she is bigger than expected. Funny for a baby who was born so tiny at 1 pound 11.5 ounces to be told she is large within 6 months. 
Lily is meeting all her expected age appropriate stages. She has not turned over at home, but nearly did so on the exam table. Her neck strength is excellent. And she scoots on her knees. I guess it's not called crawling until she is on her hands and knees. Either way, she moves. 
Her doctor said babies generally either excel in movement or speech and Lily is a talker. She is now at 22.75 inches and 14 lbs 9 oz. With Jed and I as parents, I guess that was to be expected. She's short like me so far, but the doctor says not to worry, it's still early. 
We can take her off of the monitor at any time now. And we definitely have to do it once she starts turning over for real. I still check on her many times during the night. She sleeps through most of the night. 
Lily got her first flu shot. She received 4 shots in all (booster and the flu) and she didn't even cry. A big change from last time when she screamed like a banshee. She has a temper. But this nurse was very calm and Lily didn't seem to mind at all. 
Lily is still on medicine, which her doctor says to let her outgrow rather than increase the dosage. I'm also supposed to relax and not worry about the issues we had in the NICU. She says Lily won't be having those type of episodes anymore.  In order words, we shouldn't worry every time she gets shots.  They shouldn't lead to her heart stopping as it did in the NICU.
Let's all knock on wood. Lily hasn't had her monitor alarm sound since December 20th. 
So in a nutshell, she is doing fine. We are very happy. 

(February 11, 2007):  Lily still hasn't rolled over yet, but she will do so soon.  I'm actually looking forward to getting rid of the Apnea  & Bradycardia machine now.  The false alarm goes off so frequently now that it's becoming a nuisance.  I still worry about not having a monitor, but having one that cries wolf all the time is getting on everyone's last nerve.  And Lily has learned to make it alarm, too.  Little sneak.  She's back to pulling cords off.

She also holds her rattle and sucks on it.  The back of her hand is practically raw because she sucks on it rather than her thumb. She doesn't want a pacifer anymore.

We also took Lily to the doctor on Friday to have her hearing checked.  She hears fine.  Her ENT doctor said it is normal for babies to tend to ignore sounds in the lower register, like Daddy's voice and computer clicks.  That is why babies respond better to women's voices.  That was a relief for us.  It was really interesting that the doctor put a probe in her ear to test the reaction of the cilia (little hairs) on the lining of the inner ear.  The test checks for whether sound is received and reaction is sent back.  The machine was just installed last Thursday, but the technology has been around for a few years.

We also took her to another doctor appointment on Friday because she has a cold.  Her regular pediatrician was not in, so we had to see another doctor.  He was okay. He said she has a cold, but it isn't into her chest or lungs.  We should just keep an eye on it.  All of us have had flu shots, but there is nothing we can do about the common cold. 

She is doing better today, but it was scary for me to have her waking up coughing and choking during the night.  Thoughts of her being in the hospital crossed my mind.  But that was my parental paranoia.  She is doing fine now.

She weighed in at 15 pounds, 3 ounces.  We had held off changing her over from pure breast milk to breast milk and rice until she had a bowel movement, which was last Wednesday.  We took her off of the Iron suppliment per her regular pediatrician's instructions from her last visit.  It's nice that she doesn't need Iron anymore as it has a tendency to make babies constipated.  I didn't want Lily having two things which could constipate her at the same time, so we waited until after the bowel movement.

Thus on Thursday she started having rice in the bottle.  I cried because she is now started on the road away from total dependence.  She now eats something other than that which comes from Mommy.  I know that is silly, but I felt it just the same.  Also, we know adding rice to the bottle isn't "recommended" anymore, except for babies with bad reflux.  It does seem to help her spit up less. 

Lily slept for 11 hours on Thursday and didn't eat as much. It is a good thing, except I can't tell if it is from her cold, or if it is because of the added rice in the bottle.  Also, she is supposed to have her reflux medicine every 8 hours.  I suppose I just worry about everything.

Lily had a bowel movement on Saturday.  She hasn't had them this close together since right after coming home from the NICU.  I wonder if this is an indication of things to come.

She has added the word, "Hi" to her vocabulary.  I heard her tell her Flutterbye birds, "I love you" the other day (in Lilyspeak, of course). That was so cute.  Lily has regular conversations with her birds many times a day.

On an "other than Lily" note: Mayfair Games has asked for a prototype of my game design.  This is a major accomplishment and preparing the prototype has been taking a lot of my time this last week.  I haven't been updating the website as much during this time.  Lily doesn't mind so much because I work from the same room with her.

(February 17, 2007):  We did it! We finally said no more Apnea  & Bradycardia monitor.  Lily's sides were getting so sore.  I just couldn't justify putting the leads on her anymore.  So we bought an Angelcare Sound and Motion monitor.  It fits under her mattress and lets us know if she stops moving.  It is sensitive enough to register when she is or isn't breathing.  Fortunately, she is always breathing.  We just have to remember to shut it off before we pick her up, or the alarm sounds 15 seconds later because it isn't sensing any movement.  It's an ease to my mind that she is still being monitored in some way.  Though doctors don't highly recommend these monitors, I would do so.  Just for the peace of mind us worry-wart get. 

The Angelcare is also a sound monitor, so we can hear her from other rooms.  She's so talkative.  She now has really loud vocal "conversations" with her birds.  She squeals with delight.  It's cute of course.

A note of warning about this monitor to to any parent of a reflux baby:  It requires being laid on a flat surface.  We are using it at an angle and it is working, but this isn't as the "required" instructions suggestion.  As Lily still likes to be in her bassinet rather than the open crib, the monitor can be held in place rather easily.  If you aren't laying your baby flat, you may want to consider another motion monitor.

Lily also had what I believe to be her first stool.  Now that she is getting rice with the breastmilk and no iron suppliment, she is going potty number 2 a lot more frequently.  I don't have to worry about her being constipated by rice.  It doesn't seem to affect her that way.

She still hasn't rolled over and this is now a concern for me, even if not for her doctor.  I make a point of giving her more "tummy time."  She also likes to be in her swing now.  At least for the last two times.  She was captivated by the zebra.  And she reached for her rattle.  That was something I was glad to see, because she doesn't do it very often.  She is definitely right handed.

We don't have any new words to offically add to her vocabulary, though she is making new sound combinations.  Her daddy likes to sing "Swing Low Sweet Chariot" to her and she sings back "kooo uhhh k", which I think is "Lily speak" for Chariot.

Next Segment: March 2007 - First Plane Flight and Visiting Family.

Lily's Story Calendar

Prior To Lily - Something Is Wrong - Time in the NICU - Lily's Health Gets Worse - Finally Coming Home -
December 2006: Our First Holidays - January 2007: Starting A New Year - February 2007: Still Under Quarantine -
March 2007: A Baby On A Plane - April 2007: RSV Season Is Finally Over - May 2007: Spring and Song Bird Lily -
June 2007: A Visit with the Neurologist - July 2007: My Baby Turns One !!! -

An Update

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or for more videos see under search Micro-Preemie Lily

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Lily of My Heart
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PO Box 763
Plover, WI 54467

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