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The story of our precious little girl's 17 months of life with Trisomy 18 (July 4, 2010 - December 15, 2011) and of us, re-learning to live "after Lilly."
"I will praise you for I am fearfully and wonderfully made ...." Psalm 139:14

Monday, January 31, 2011

Cardiologist report

In God's kind providence, Dr. R, Lilly's regular cardiologist, is working in the hospital this week and came to see her. He was surprised by what is going on with her heart. He hadn't expected it as he didn't consider it a Trisomy 18 thing. It was good to see him and get a couple questions answered.

We first asked about the normal size of Lilly's heart. He said that she normally did have a larger heart. (Though it definitely is much larger now.)

We next asked about "heart failure." He explained there were at least two meanings. In one, the kind of problem for which Lilly was treated in Florida, the heart is pumping strongly enough but blood flow is improperly distributed. The kind of heart failure Lilly is facing now stems from her weakened heart's inability to pump enough blood. (especially the left side of her heart)

The two most probable explanations for the current weakened state of Lilly's heart are: (1) a general infection (especially affecting her lungs) has so impacted her breathing that her heart has been forced to overwork in compensation; (2) an infection in her heart has swollen and shocked it into inefficiency. The recovery is longer from the latter. Only time will tell, in regards to both the cause and solution of Lilly's current condition.

Dr. R ordered another echo for this afternoon. We haven't heard the official results yet but the tech doing the echo did comment that it looked much better than the one he did on her yesterday morning.

Lilly made progress this afternoon by being able to tolerate the move from the C-PAPP to a high flow nasal cannula (sp?). In other words, instead of having air forcibly pushed into her lungs, she now has oxygen provided at her nostrils but must breathe it in through normal respiratory efforts. (So goodbye fighter jet face gear! it's just a small tube with prongs in the nose now.)

The shift over from forced air was a little traumatic, but about two hours later she seemed comfortable. And now she's sleeping happily in her daddy's lap. Ooops ... spoke too soon. She's my energizer bunny - those eyes always seem to be open.

Here's another good scripture for Lilly: "You are my hiding place; You shall preserve me from trouble; You shall surround me with songs of deliverance." Psalm 32:7

Keep fighting little "fighter pilot"!

During the night last night, Lilly's fever dropped down to almost normal. This morning it shot back up to 102 degrees. Dropped again to 99 then back to 100. So it's still there but better. (For those who asked - Lilly was checked for a UTI almost as soon as we got here and it came back negative.)

Last night we got word that the cardiologist said Lilly's morning echo showed a little less fluid. The doctor is continuing to give Lilly a high dosage of Lasix.

We've also been asked by some people if Lilly has apnea. So far the answer is "no." The nurse that cared for her the last 2 nights said she had two children that have sleep apnea, and she didn't observe any of the characteristics in Lilly as she cared for her during the night.

We found out that Lilly is now 22 inches long. That is 4 inches longer than at birth. That means she's no longer the height of an American Girl doll, but taller. So I will just have to take another picture of our "All American Girl" once we go home. (There is an early picture of Lilly with my other daughter's American Girl dolls down at the bottom of this blog.)

One nurse Lilly saw on Saturday gave her a HUGE compliment. She called Lilly "chunky!" Isn't that great? Lilly's nurse today is a man that reminds of an in-shape biker dude. But he's really good with Lilly.

I initially thought of Lilly's C-PAPP oxygen get-up as making her look a little like an elephant with a long trunk. But my dad said it reminded him of a fighter pilot. I decided I like that description a lot more. Goes with the whole tough Lilly keep fighting theme.

Last night once they started Lilly back on her milk she got quit and relaxed and was finally able to sleep. Since then she's only made occasional verbal comments. So that made us think back to her non-stop talking yesterday. Here we thought she was just trying to have a nice conversation with us. But really she was probably saying "I'd like some milk please." "Please may I have some milk?" "Excuse me - please get that milk started." "Hello? I'm hungry here." "OK - I AM STARVING TO DEATH!' "GIMME MILK NOW!" "Wow these people are dense ..." Poor baby.

We are so thankful we can both be here every minute with our Lilly. But we miss our other two children terribly. (They are staying with my mom and stepdad and seem happy though. I'm sure my daugher doesn't mind missing homeschool!)

Thank you to everyone who have left encouraging comments on the blog, sent e-mails (yes I read them - just haven't made the time to respond), left voicemails, or come by. It really is encouraging to us to know there are so many people praying for our little Lilly. Thank you, thank you! Lilly is proof that "the prayers of the righteous avail much."

We just got word that Lilly's regular cardiologist is in the building and is coming to see her shortly. And that he asked that she have another echo.

"Oh, how great is Your goodness, which You have laid up for those who fear You, which You have prepared for those who trust in You in the presence of the sons of men!" - Psalm 31:19

Sunday, January 30, 2011

Chatty Lilly at the hospital

I woke up a little before 5:00 a.m. this morning to the sound of Lilly talking. A nurse was with her and apparently trying to soothe her as Lilly was very restless. I got up and managed to hold her, with all her tubes and oxygen. Oh it was wonderful! And Lilly liked it too - she calmed down quickly. Poor baby - she had gone so long without being held. She wasn't used to that. So I sat carefully in the chair by her bed holding her and just enjoying the feeling of her skin. She was happy and started talking to me. That was great because yesterday she didn't make a sound. I could also see that her coloring was pretty much back to normal.

When her daddy got up she sat with him and he read the Bible to her. She had lots of comments (amens?) to make. She got especially worked up over Psalm 9:10 which says "And those who know Your name will put their trust in You; for You, LORD, have not forsaken those who seek You."

Lilly had a chest x-ray and echo this morning. She still has fluid on her heart and it is still enlarged. Her fever dropped from 102 degrees to 100.5. The doctor believes that she has a virus. (We don't know what - but it's not RSV.) Because her body is fighting off the virus so hard, her heart had to work too hard. The oxygen (C-Papp) is helping her. But she is still incredibly weak. The doctor today said that even if she regains her strength and gets the VSD repair heart surgery, that she could still die of heart failure. This was the first time I heard this. This dr. is NOT a cardiologist. Her cardiologist in Florida said that the VSD repair would mean that she wouldn't die of heart failure. So not sure what's going on with that.

Lilly is still on an anti-napping strike. In fact, she talked almost ALL day other than one or two catnaps. My husband started wondering if she has the strength to cry since she hasn't. I can't stand thinking about it that way - I told him maybe the oxygen was making her feel well enough she didn't need to. He made this comment right after the nurse inserted a new NG tube and Lilly didn't have much of a reaction. She started milk again this evening, and soon fell asleep after that. Maybe hunger was keeping her awake.

Maybe maybe maybe. All these maybes are a bit frustrating. I like things to be black and white.

Lilly had a bit of trouble breathing this evening. They had to turn her oxygen up higher and she was agitated. It was a bit frightening. She's sleeping now though, and seems to have leveled off.

Lilly picked up some more prayers today. The hospital chaplain prayed over her twice. Two couples I never met (who know of the blog and Lilly from a prayer group) showed up and prayed with me. The Mr. & Mrs. G. from church came and prayed and bought my husband dinner. (As a nursing mom, I get meals brought to me.) Then Mrs. B. came by and brought a bag with food. Yum - I'm thankful because my dinner didn't stick with me. :P

I'm not sure what's going to happen next. We are praying that Lilly will come home with us very quickly. But ... if her numbered days are coming to an end, I am begging God not to let her suffer. Whatever happens, it will be to His glory. But I still want to keep her longer! Much much longer ...

Saturday, January 29, 2011

Hospital details

My husband and I are at the hospital with Lilly right now. I'm very tired and today was a bit of a blur but I want to write down basically what happened before I forget anything.

I woke up this morning about 4:30 and thought that Lilly's breathing sounded a bit weird. Sort of gasping in some parts and I could hear some clicking. I picked her up and it stopped. When it started again I took her downstairs and boiled water and we sat under a blanket with it. The steam seemed to help some but I thought she still didn't sound right and her coloring didn't look right.

I called her pediatrician and we went to the closest hospital. They put Lilly on oxygen and that helped quickly. The doctor was asking me about her and seemed stuck on the fact that she is almost 7 months old and has Trisomy 18. He finally asked if anyone had told us the prognosis of the disorder. How fun to blow the mind of medical people. A chest x-ray revealed a lot of fluid on the heart and lungs, and that her heart was enlarged. We were told Lilly was dying. (I am very grateful to Dr. and Mrs. S. for coming to the hospital and praying for Lilly with me.) Lilly was given a dose of Lasix.

It was decided that Lilly needed to be transferred to another hospital that had a pediatric intensive care unit. So Lilly and I got to ride in an ambulance. (I suppose it would have been more exciting had it be under better circumstances.) A group of doctors and nurses quickly assessed her and she was made comfortable in the little bed.

Lilly had an echocardiogram to check her heart. It verified the enlarged heart and lots of fluid on it. The doctor said that they didn't know why her heart suddenly has started failing like this. (Doesn't sound like it's caused by the VSD.) But that they would do another chest x-ray and echo in the morning to see if the medicines are helping get that fluid off the heart. If not, she said we would have "a different conversation." I asked if she had the VSD surgery quickly if that would help. The doctor said that she would not survive the surgery right now. The anesthesia would kill her.

I hate this. I'm just not ready to lose Lilly. But I admit that I don't think I ever will be. I just want so badly for her to beat all those odds and live to be one year old. (Of course I know I'll want her to live longer than that once we get there.) Please God - let her live to your glory!

"But you, LORD, do not be far from me, You are my strength; come quickly to help me." - Psalm 22:19

On a good note, Lilly looks fantastic compared to what she did this morning. (She looked ghastly then.) Her color is back in her cheeks, her eyes are opened wide, and she's making occasional little sounds. She doesn't have any socks on to kick off, so she's being "sneaky Lilly" and kicking off the blanket. She's able to track my voice with her eyes if I move away from her. We so badly want to hold her but she has this enormous oxygen contraption wrapped around her head.

We had a strange and amazing thing happen at the first hospital. Not related to Lilly but to our son. One of the doctors who worked on Lilly became extremely touched when he saw my husband bring our son and older daughter into the room. He asked me hold old my son was and said he had one the same age. He complimented my sons manners. I noticed he was watching him when he interacted with me and Lilly a little. Then he came into the room and handed my husband a big wad of cash. He said something like "I was going to go out and do something I shouldn't after work today. But instead I'm going home to my son. When you came in with the baby it didn't really hit me until your son came in. Please take the money." Wow. God really can punctuate the bad with beautiful things!

"For He has not despised or scorned the suffering of the afflicted one; He has not hidden His face from him but has listened to his cry for help." - Psalm 22:24

Please please be praying the tests tomorrow will show the fluid has greatly gone down.

"Dear Lord please hear the prayers of your people and answer us."

Lilly Is In The Hospital

Lilly is in the hospital with massive heart failure. Please pray that the medicine will clear up fluid.
(This is typed by Lilly's big sister.)

Friday, January 28, 2011

No smiles today :(

In contrast to Lilly's good day yesterday, she had a bad night and rough day today. She woke up every hour last night with either a dirty diaper or needing her nose suctioned out.

This morning I spent about 45 minutes suctioning her nose with the bulb syringe. It was soooo thick. And she gagged on it and spit up several times. Yuck. Then she seemed OK until mid-afternoon when she started having gas. (I didn't give her any Zantac last night or today - trying to see if she still needs it. It's an acid reflux medication they gave her at the hospital when she had gas pains. I just gave her a dose though, to see if it helps.)

Lilly's wanted me to hold her much of today. Thank goodness for my moby wrap carrier! That allows for hands free carrying so I can get a few things done. (Though we still have to lug the pump pole behind us everywhere.)

Poor little thing - I sure did miss seeing her smiles today. I just love this little girl to death! And what's awesome to think about is that as much as I love her, God loves her even more.

"Can a mother forget the baby at her breast and have no compassion on the child she has borne? Though she may forget, I will not forget you!" - Isaiah 49:15


Uh-oh - now there's a clog in the pump tube somewhere. I'm praying it's in the milk bag tube and not Lilly's NG tube . . . there's been enough to deal with today. (Tomorrow is NG tube changing day.)

Thursday, January 27, 2011

More milk please!


This morning Lilly was smacking and sticking out her tongue, as she does when she's thirsty. In the past I would get water for her and feed it to her with her sponge-on-a-stick. But today I thought I'd try giving her some milk with a syringe. I honestly didn't have high hopes as I figured she'd just spit it up as she so often does when she has the tube in. But she surprised me. Not only did she seem to enjoy the milk and keep it down - but she drank ONE OUNCE through the syringe! That is huge for her!

Then this afternoon I took the kids outside. Lilly started fussing and sticking her tongue out. So I took her back in and got some more milk for her. She drank almost another half an ounce. It was truly exciting and I started having visions of getting rid of the NG tube. Lilly didn't really try to suck the syringe and she does a lot of tongue trusting. So I quickly ordered a haberman feeder for her, figuring that even if she wouldn't suck, I could more easily dribble the milk in for her. (This is a type of bottle for small babies and is supposed to work well for special needs baby.)

So tonight us girls may dream of leaving the NG tube behind and going to the place where she only eats by mouth!

"Go up to a land flowing with milk and honey . . ." Exodus 33:3
:)

Tuesday, January 25, 2011

Lilly's beautification routine


Victory! Isn't that a great word? Notice the beautiful yellow rose in this first picture. It's called a "Victory Rose." Isn't that a fitting name for Lilly's first plant? A little Victory Rose bush was given to Lilly by the C. family when they visited her in the hospital last fall. We brought the plant home and it's doing well, just as Lilly is.

Every morning around 9:00 Lilly gets her morning medications. While we're sitting there, I often take advantage of that time to give her her daily beauty treatment.

First I dip a sponge-on-a-stick into water and use it to clean off her lips. She also greatly enjoys sucking the water off the sponge. Then if she's sounding congested I squeeze saline nose drops into her nose, wait a minute, then use the bulb syringe to clear her nose out. Next I rub cocoa butter onto the dry side of her face. (It's always the side that had the tape on it last.) I think we've got her cradle cap cleared up except a little left around her eyebrows. There I rub in some coconut oil, and then after a few minutes wipe it off, along with the cradle cap stuff. Next it's handwashing time at the sink. Since Lilly keeps her hands closed, they can get pretty smelly! So we wash her hands. Then often after drying them, I insert her "diplomas." (Rolled up bits of washcloth to try and encourage her to loosen up her grip.) Finally the fun part - getting her out of her nightgown and dressed for the day.

(second picture) Sneaky Lilly strikes again! I put her on the changing table and before I knew it - her sock was off and she was laying there all innocent and still. How does she do that?!

Yesterday in a google search, I came across a YouTube video of another girl with Trisomy 18 named "Lilly." This little baby only lived 6 hours. The video shows her with her parents in the hospital. Her father is rocking her in a chair. Little Lilly is so still in his arms and he is looking down at her. Then he glances up into the camera. In that brief moment I could see the pain in his face of his heart breaking. I couldn't watch anymore.

"For what is your life? It is even a vapor that appears for a little time and then vanishes away." - James 4:14

That video reminded me that that is the reality for the majority of parents of Trisomy 18 children. I don't always think about that, nor do I honestly want to. I feel so much safer surrounded by my little group of other mamas of trisomy 18 babies/toddlers that are doing well. In fact, just today I got an e-mail from the mother of F., who is TWO years old. And I talked on the phone with the mama of G. who is exactly one month younger than Lilly. Both of these little girls are really doing quite well. What wonderful encouragement.


I was struck this evening by the thought that when God chooses to give a Trisomy 18 baby to a family that that does not mean a curse. It is an HONOR. I'm not saying there's not pain involved. But as I look at Lilly's face (she's in my lap right now smiling at me) I can see what a glory to our Father she is.

(last picture) I love this picture of my husband holding Lilly. Her head looks so small in his hand. But it's "gift wrapped" in her headband and bow.

Monday, January 24, 2011

Big bows and headbands


Weight check = 8 lbs. 7 oz.

Lilly's great aunt is visiting from Fla. and brought with her an assortment of headbands and bows for Lilly. This one is so cute and so funny. It looks like one of those turbans from the 1940s at some angles.

A couple of you gave me suggestions about using different tapes, and/or a sponge with the feeding tube on Lilly's face. (Her face is pretty irritated from the tape we've been using.) I went to the medical supply store today with my list and got a few different things. Unless something happens before, next tube changing day is Friday, so we'll give some of the new stuff a try.


Lilly as been extra smiley and chatty this evening. It's so wonderful! She was talking up a storm during family devotions at prayer time tonight. (She's the only child in the family that can get away with that!) Surely she was praising the Lord who has been so merciful to her!

"Sing to the LORD, for He has done glorious things; let this be known to all the world." - Isaiah 12:5

Thursday, January 20, 2011

Always watching ...


Weight check = 8 lbs. 5 oz.

As you can see in today's picture, Lilly is sleeping with her eyes cracked open. (There's no sneaking up on her!) She does this a lot. I have a problem with dry eyes so I often think it can't be good for her to have her eyes open a long time without blinking.

You can also see a stripe of redness on her cheek. That was from where the tube was a day or two before. (I'm finding that pure cocoa butter is clearing that up pretty well.)
I took Lilly to the medical supply store to see if they had any recommendations regarding how the tape has been irritating her skin lately. It was funny - when I walked in with Lilly the lady working there said she thought at first I was carrying a baby doll. She was afraid to say anything since Lilly is so young, without her pediatrician's approval. So now Lilly's pediatrician and nurse are looking into it. Not sure I want to try some of the random ideas I've heard about online, especially after seeing some of the products in person.

If you have had a child on an NG tube - what did you use for securing the tube to their face and would you recommend it? I am currently using Tegaderm tape for Lilly. It peels off wonderfully - she doesn't seem to have any discomfort at all.

All this (plus a number of other things) has made me want very badly for Lilly to learn to either bottlefeed or breastfeed well enough so we can just be done with the tube/pump. So lately she has been having daily homeschool lessons in those things. If you would say a prayer that she would learn to eat normally (without burning too many calories!) we would be grateful!

"You will keep in perfect peace all who trust in you, whose thoughts are fixed on you! Trust in the Lord always, for the Lord God is the eternal rock." Isaiah 26:3-4

Monday, January 17, 2011

Next size please!!



Lilly would rather chew on her knuckles than play piano. :)

I am very excited that Lilly is "graduating" from preemie sized diapers to newborn size! Yes her legs are finally getting enough chunk on them. You can't tell in these pictures, but if she were next to a "normal" baby, you would be able to see just how narrow Lilly is. (Small head, tiny shoulders - just plain narrow!) So seeing chunkiness appear on her arms and legs is very exciting.


I've decided headbands are Lilly's friend. Cuteness factor aside (they make her look like a present with a bow at the top) they are proving to be really good at helping hold her tube in place.

Yesterday - right before we walked out the door for church - Lilly's NG tube slid out. It wasn't Lilly's fault though, the tape has been peeling away and I hadn't done anything about it since today was supposed to be tube changing day. We ended up taking Lilly to church without the tube and wow was that special! Getting to see her whole face without tube and tape and not being connected to anything is wonderful.


My oldest daughter loves lily flowers. (And anything that makes her think of our Lilly.) Last week she spray painted her bike green and then gave it a new name. "Lily of the valley."

"I am a rose of Sharon, a lily of the valleys." Song of Solomon 2:1

I planted some lily of the valley bulbs this fall - can't wait to see them this spring!

Sunday, January 16, 2011

Gift of a Lifetime


Focus on the Family has recently published a booklet written by Tammy Tate, called "Gift of a Lifetime." It's purpose is to give information and resources to parents that receive the news that their baby may not survive birth.

Even though we have gone through, and are going through, things the booklet talks about I have learned some good information - both for us and for helping others.

If you know someone that could be benefitted by this booklet, it can be ordered from Christian Book Distributors:

The booklet has beautiful pictures in it, including two of Lilly. :)

Thursday, January 13, 2011

Chatty Lilly

Weight check = 8 lbs. 2 oz.

Lilly has been awake much of today. And she's been spending a lot of time talking! She's talking loudly to her daddy as I type this. I don't know how well the below video will work, but I tried to get a little of her talking this morning.

video

"He put a new song in my mouth, a hymn of praise to our God. Many will see and fear the LORD and put their trust in him." - Psalm 40:3

Wednesday, January 12, 2011

Tight fisted (but not about money!)


Lilly seems to be doing better with her congestion today. She just had brief times when her breathing was noisy. Lord willing her cold will prove to be a mild case.

I have noticed again that I am drawn to baby hands. Whenever I'm around new babies I find myself looking at their hands and admiring how they open and close their hands and wiggle their fingers around.

Lilly still doesn't do that, as you can see in these pictures. Sometimes she'll open a couple fingers up, but I don't know if I've ever seen her unclench her thumbs and forefingers.

We hope to change that with physical therapy. We've started things moving in the system to get that set up. Hopefully Lilly can start soon! I look forward to seeing her open her hands one day. And to see her just strengthen her body's low muscle tone.

As Jesus himself said, "with God all things are possible." Matthew 19:26

Tuesday, January 11, 2011

The Unwanted guest


Lilly and my son both have colds. Lilly doesn't really have a runny nose, but I can hear a lot of congestion in her. She spit up several times today (spitting up is actually pretty unusual for her) and it was mainly mucus. Saline drops and the bulb syringe just don't seem to be able to reach the junk. We sat under a blanket with a pot of boiling water for awhile. I think the steam helped some. I know it's just a "common cold" but it makes me a bit nervous with Lilly. Colds can be epecially rough for Trisomy 18 children.

In spite of her cold, Lilly was happy most of the day. Quite chatty at times, and seemed to especially enjoy tummy time on the quilt.

"And the prayer offered in faith will make the sick person well; the Lord will raise them up. . . . Therefore . . . pray for each other so that you may be healed. The prayer of a righteous person is powerful and effective." James 5:16-17


Saturday, January 8, 2011

Lilly is EIGHT pounds!!!


Weight check = 8 lbs.!!!!!!!!!!!!!!!!!!!!!

Yay!!!!!!!!!

"Oh, give thanks to the LORD, for He is good! For His mercy endures forever."

We're having trouble getting Lilly's tape that holds on her tube to stay put. Her skin is so dry and the tape is leaving red blotches. The new pieces don't want to stick well. I had to replace the tape this morning. I tucked the tube into her headband to see if that will help hold it some. And I'm upping my prayers that Lilly will be able to just be done with the feeding tube soon and eat normally!

Tube wars

It's 12:10 a.m. and Lilly and I are having a royal battle with the NG tube. I want it in - she doesn't. The tube slid out a couple hours ago - not sure why. And of course, she isn't getting sleepy though it is way past our bedtime. She really knows how to yell and make her body go rigid in protest and constant crying means I just can't get the tube to go down right. So we try, then take a break. Then try again. The bonus I suppose is that I'm getting some things taken care of on our breaks.

I love this little girl more than words can express. She's wearing her nightgown and wrapped in her quilt in my lap right now, looking up at me with her big eyes and saying something every once in awhile. She had a good day. Lots of smiles and talking. I hate playing nurse with the NG tube. I feel so mean. (Yes I know I'm helping her ... but I still feel horrible about it at times ...)

Just wish the day didn't end this way.

"Make haste, O God, to deliver me! Make haste to help me, O Lord!"

Thursday, January 6, 2011

Cardiologist report


Weight check = 7 lbs. 15.5 oz. !! (This was Lilly's weight on the cardiologist scale. She's an ounce heavier on it than our scale - we like that!)

Lilly's cardiologist appointment went smoothly yesterday. She had an echocardiogram done on her heart, as usual. The pulmonary artery band is still a perfect fit. So that means Lilly has more time to hopefully reach 10 pounds before her open heart surgery.

I need to take my camera next time. Lilly looks so cute and tiny on the table where she lays to get her echo done.
The cardiologist said that at her next appointment, in 6 weeks, he will evaluate her weight and band, and see if we should start setting up a date for surgery. But there's no rush, Lilly is doing really well with the band and her medications.

I did learn something that I wasn't expecting to yesterday. A cardiologist in training was working with Lilly's cardiologist and she noticed Lilly's cradle cap. She noted that cradle cap is a fungus and that it can spread on the body. In fact, apparently that's what the weird scaly stuff that Lilly sometimes has on her eyebrows is. She said that dandruff shampoo clears it up quickly. I found that interesting but am not sure I want to use dandruff shampoo on my baby's delicate head. Instead I decided to first try a recipe in my aromatherapy book, using almond oil and one drop of two different essential oils. It seemed to work well. I need to do a couple repeat applications though before I form my final conclusion.

After Lilly's appointment, we took my husband back to work. We went in with him so that Lilly could meet one of her fans that knew we were going to be there. (The mother of a co-worker of my husband.) She was so kind and told me how much Lilly and the blog mean to her. Not only did she give Lilly lots of sweet compliments she also brought dinner for my family and I! A yummy roast and veggies in a big beautiful bowl that we get to keep. How's that for thoughtfulness?!

Article - Boy with Trisomy 18

Just wanted to share an article my aunt in Florida sent me, about a little boy with Trisomy-18. I was fascinated as I can't recall reading about many boy survivors. This little guy is about 20 months old:

http://www.gainesville.com/article/20101224/ARTICLES/101229730

Lilly went to the cardiologist yesterday and all is good. I'll post about that later today when I can make the time to do so.

Tuesday, January 4, 2011

Happy 6 month birthday Lilly!

Praise the Lord Lilly turned 6 months old today! This is a huge milestone for a Trisomy 18 baby. I remember my first goal for Lilly was to just be able to bring her home from the hospital. Then I wanted to get her to 1 month. Then I prayed for 6 months. And here we are! My next prayer is 1 year. Once she makes that she'll be one of only 10% of Trisomy 18 babies that have survived their first year.


I love when God does things that surpass my expectations. :) I love what God says in Jeremiah 33:3: "‘Call to Me, and I will answer you, and show you great and mighty things, which you do not know.’"

Check out Lilly's little double chin in today's second picture!


In the last picture, Lilly has just fallen asleep after having "tummy time" on the floor. I try to get down on the floor with her for a little while every day so she can have the opportunity to lift her head and strengthen her muscles.

It's sort of strange seeing normal babies and what they're doing by 6 months. Lilly can only smile, stretch, roll onto her side (sometimes), and lift her head off my shoulder on occasion. Sometimes I start to feel sad for her, and all of us, when I think about that. But that doesn't last long because I'm just so incredibly thankful that she is still alive!

"The LORD is my strength and song, And He has become my salvation. The voice of rejoicing and salvation Is in the tents of the righteous; The right hand of the LORD does valiantly. The right hand of the LORD is exalted; The right hand of the LORD does valiantly. I shall not die, but live, And declare the works of the LORD. . . . I will praise You, For You have answered me, And have become my salvation." - Psalm 118:14-17, 21

Sunday, January 2, 2011

Priceless smiles


Lilly wore her new Christmas dress to church today. The arm length was enormous on her, but since it had elastic at the wrists, it was fine - it just looked like giant puffed sleeves. Dressing Lilly is like dressing a baby doll.

Lilly also had on her red Mary Janes which were knitted by our friend K. Great news about K. and her husband - they just received a newborn to adopt a few weeks ago. K's Etsy store sells knitted Mary Janes, among other items. All profits go to support orphans and adoptions. Please check out: http://www.etsy.com/shop/craftingadoptions

Lilly was so happy and smiled so much in church today that it made me want to burst into [happy] tears. (And wish I had had my camera with me!)

"May the Lord smile on you and be gracious to you. May the Lord show you his favor and give you his peace." - Numbers 6:25-26 (New Living Translation)

Saturday, January 1, 2011

Happy New Year from Lilly!


Weight check = 7 lbs. 12 oz.

Happy new year! Lilly has been celebrating today by blowing lots of spit bubbles. (Photo credit - my oldest daughter.)

Lilly's had a busy week. Out-of-town visitors for several days and then we went out of town for several days. Lilly seemed to have enjoyed everyone.

Lilly has been scrubbing her face a lot and is pulling off the tape that holds the tube on her face. The tape does irritate her, but she also has been greatly enjoying putting her fist in her mouth. So last night I decided to use a safety pin to hold her hand down from her cheek. (2nd photo) The pin is from the bottom of her sleeve to her clothing. She can just get her hand in her mouth, but not rub the upper part of the tape.

One present that Lilly got for Christmas was a beautiful smocked dress from B. & A. It is a handmade dress. I have no idea how people smock and am always extremely impressed by it. This dress should be a perfect Easter dress with Lilly, along with a white bonnet. :)

While on our trip, we went to my sister-in-law's bakery and Lilly discovered that she really enjoyed sucking on a spoon. I dipped it in cold water and held it to her mouth and she thoroughly enjoyed licking and sucking on the spoon. Later that day she took part of a bottle. I think she's becoming much more interested in using her mouth lately. She's a little less sure of the swallowing process at times, but can do it. I think (and pray!) she's going to be quiet interested in food when she gets to try it.

Thank you readers for your prayers and support - we are so grateful! It's made such an incredible difference in all our lives. We wish you:

"Grace to you and peace from God our Father and the Lord Jesus Christ." - 1 Corinthians 1:3