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

May 2007 - Spring Brings Out My Song Bird Lily
Prior Segment: April 2007 - RSV Season is Over - No More Quarantine

Lily was born prematurely at 25 weeks (6 months) gestation. She was a micro-preemie, weighing just 1 pound 11.5 ounces and was only 13 inches long. Lily spent her first three months in the hospital's Neonatal Intensive Care Unit (NICU). We are happy to have her home now. Today Lily is a happy, healthy, and very vocal baby. This is her story.

(May 1, 2007): Lily yelled for "Mah-MEEEEEEE" very distinctively and purposefully today. She was in her crib and I had walked out of the room. She wanted to let me know that was not acceptable. After her usual random words of Hello, Hi, Brooooommm, and Eeeeck, she had had enough and wanted my attention. Jed's mother said she would do this the rest of her life. I don't mind. I waited a long time for this.

We are having a lot of fun with our little mockingbird. She still just acts cute and squeals if she can't repeat the word, but she's getting better at the rhythm of words. She loves singing. She is definitely ahead of her age on her musical ability. That's her Daddy in her, even if I sing to her just as often, if not more. Her reaction was precious the other day when I sang the tulip and rose song, which I hadn't sang for a week or so. Jed usually sings that song to her. I was trying some new and different songs at first, and then started what is one of her favorite songs. Lily instantly got happy because she recognized it. That was really nice. I don't sing well, but she still likes me to sing.

(May 3, 2007) I had my birthday yesterday. It was nice and quiet. Just right. Though I would have liked a little cake. Jed doesn't like cake, so we don't have it very often and yesterday would have been a good excuse. This has reminded us though, that Lily's first birthday will be coming up in two and a half months. Wow! Where did the last year go? When we were in the NICU, it seemed like it was forever, and now the months have just zoomed by...

We will have cake on Lily's birthday. We are going to try peas soon. We agreed that would be her first vegetable. As usual, we want to do this together, so we'll wait for the weekend.

We all went for a walk in the evening. We walked to the local park and back. The sun wasn't so bright because of the time of day, so Lily enjoyed it more than before. We try to get out and walk with her a few times a week.

I'm so glad the snow is gone. Hopefully, there won't be any more until Fall. We planted corn, tomatoes, herbs, and some other vegetables in pods a week or so ago. We placed them outside yesterday. This summer I'm thinking of taking Lily out with me to water in the mornings. I'm so glad she is turning out to be a morning person. At first, she was a night owl. I guess this will change often until she settles into her own in the teenage years.

Jed got a real kick out of Lily this morning and the realization hit that we have to change the entire front room now because Lily is no longer content to remain on her play blanket. She rolls and continues rolling across the floor. It is nice that she is having both advancements in her motor skills and verbal skills at the same time. Before it was one or the other for periods of time.

She also tried the "Johnny Jump Up" for a few minutes yesterday. I finally asked for help assembling it. It wasn't rocket science, but I just couldn't figure it out from the instructions. So Jed and our co-ordinator Wendy put it together. Yeah, I felt kind of stupid, but it took them three tries to get it right, so I'm not so dumb. The producers really need to work on those directions.

Oh, and here is my "what a wonderful product I just discovered" plug: Johnson and Johnson preloaded baby wash clothes. These are wonderful. It cut the clumsiness out of Lily's bath time. Bathes are now just the right length of time for Lily to enjoy them without completely emptying out the tub through splashes. I love to see her happy.

We still haven't seen any teeth popping out of Lily's gums. I beginning to think she just wants to chew on everything for the pure joy of it. Being a person who loves gum, I can understand.

(May 5, 2007) Lily had peas today. She loved them. This was her first vegetable. We took pictures, of course. What a mess! (smile)

(May 9, 2007) Today we tried carrots. Lily does not like carrots. She also had a tummy ache during the night. We won't try carrots again for a while.

(May 12, 2007) Lily thinks green beans are yummy. Maybe even more than peas. She likes Daddy to feed her because she gets messier that way.

(May 15, 2007) Peaches. Lily loved peaches, but they went through her very quickly. She is also now grabbing her spoon to try and feed herself.

(May 17 , 2007) Sweet Potatoes. Another food Lily enjoys, somewhat. Lily also went to the doctors today. She now weighs 19 pounds, 8 ounces. She was measured as 26.5 inches long. Quite an armful now and still a wigglewart. She had a blood test and her iron is "very good." She now can have her finger pricked instead of her heal. It wasn't too tramatic for her. The nurse was great. Lily's doctor said she didn't feel Lily will need RSV shots next year because her lungs did so well this year. She said that most of the time a problem would show up in the first year if there were going to be difficulties. I hope this is the case and her lung continue to do well.

(May 20, 2007) Today was commencement for the graduating class of 2007 University of Wisconsin-Stevens Point. Jed attended the ceremony as part of the faculty (it was required). Our friend Kevin graduated. Kevin was the one who drove us to the hospital in Marshfield back on July 19, 2006. He sat behind Jed at commencement and commented that he felt like they were at Hogwarts and Jed would pull out a wand from his robes at anytime. Yes, Jed does have a crazy professor look to him. Especially the hair.

We also went to Kevin's graduation party at Iverson Park. It was interesting to see his extended family. It was also nice to see Trescha, his finance, with whom I used to work with at Sentry before my sudden departure into the hospital. They introduced us as "The people who we house-sat for while their premature baby was in the hospital. Look at her now!!!" I appreciate Kevin and Trescha so very much. They are good friends.

Looking back, however, it wasn't a good idea to spend so much time at the graduation picnic, as Lily got sniffles. She also was kind of gasping for air the next day. As any parent knows, "yhhhhaaaahhhhhhh" is a terrifying sound to hear coming from your baby. We did salene drops and suctioned her nose. This wasn't a major episode, just enough to remind us that she still needs special care as any baby does.

One not so good thing came from this though. Lily learned to make the wheezing sound.We called the nurse line and asked about the noise. They said it didn't sound like a real gasp for breath so much as new sound. She thinks it's fun, and boy does it get a reaction from Mommy! When the little pretend coughs don't work anymore, the wheeze does. Even if I'm standing right in front of her and can see she is just playing, it still unnerves me.

(May 22, 2007) Lily is now holding her own bottle. She does it more when Daddy feeds her. Jed says it's the pillows factor. She likes to cuddle more when I feed her.

(May 24, 2007) Lily's first words after waking up this morning were: "purrrrddrrrrr, MEOW!!!" This cracked me up so much. I know they were random sounds, but oh so funny. Kind of touching too, as Lily carries the middle name Ebony after our precious 20 year cat who died about 6 weeks before Lily was born. Some people didn't understand why we named our baby Lily Ebony, but anyone that knew us well understands.

We do not know where the infection came from which caused Lily to be born early at 25 weeks, though we do know any earlier and she probably would not have made it. Ebony accidentally (?) bit me 2 days before she died which forced me to get antibody shots. I believe those shots were what held off the infection for the extra time that Lily needed. And yes, I have asked a few doctors who told me no, the infection did not come from the bite. Losing Ebony was very hard on us, but she gave us a wonderful gift (Lily's chance at life) as a going away present.

(May 30, 2007) Lily can now sit up on her own. She would rather be lying down, however. She also is rolling all over. I ordered alphabet and number foam playmats so we can cover the entire living room floor. She doesn't stay on the blankets anymore, and I don't like her to be directly on the carpet.

I'm a bit worried about Lily's teeth. Most babies get their two bottom teeth and two top teeth first. Lily is getting one on the right side first. It should be popping out any day now. She enjoys a cold damp cloth to suck on more than most her chew toys, except her tiny white bear. She loves that tiny white bear. There are really two of them, but we won't tell her that.

Lily was born right at the time that babies are developing their teeth buds, so I will ask the neonatologist if we should schedule her for xrays. A lot of preemies have teeth problems because the teeth didn't get to form before they were born. Jed says I'm worrying too soon, and that the doctor says some babies just start out with a side tooth.

Lily has an evaluator from "Birth to Three" from the state coming out to see her on Thursday, May 31st. We have her official 6 month evaluation at St Joseph's Hospital on June 6th. She is now 10 months by birth, but a little over 6 months adjusted.

Next Segment: June 2007 - Lily the Rug Rat -- And She's Off.

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

You can also see a video of Lily below
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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