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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

Tuesday, December 28, 2010

Weight gain

Weight check = 7 lbs. 10 oz.

Seems like a big weight gain from Christmas Eve, which was 7 lbs. 4 oz. Maybe the new scale is still getting adjusted. But we sure like thinking 7 lbs. 10 oz. is correct! And it really makes more sense.

Today Lilly is wearing a purple hat that her big sister wore the day after she was born.

Lilly was really fussy last night - crying about every hour. She'd stop whenever I changed her diaper. That was a lot of diaper changes! I hope that doesn't become a nighttime habit. I already change her diaper 1-2 times a night because if I don't, she'll leak right through her disposable diaper and diaper cover. She's on continuous feed so that mean lots of wet diapers.

Lilly is, as my husband puts it, "a little lady." She does not like having on a wet or dirty diaper and will often cry if we don't change her quickly enough. My sister-in-law and I both used infant potty training with our children that are now toddlers. (It saves a lot of diapers!) One thing none of our children were very good at was developing a signal to tell us when they needed to go. (Though the book we consulted said they would.) I joked the other day that it would be funny if Lilly were the one to give me a signal when it was time.

We were reflecting today, once again, how merciful God has been to us with Lilly. She will be 6 months old in one week!

As King David prayed to the Lord, I think this is very fitting for Lilly too for God's continued protection of her:

"Keep me as the apple of your eye; hide me in the shadow of your wings." Psalm 17:8

Monday, December 27, 2010

The Snow Princess

We had snow yesterday! It was absolutely beautiful as the snow fell from the sky and covered the trees, ground, and everything else!

"The heavens declare the glory of God; the skies proclaim the work of his hands." - Psalm 19:1

Today was sunny and warmer so I bundled up Lilly and took her out in the snow. In spite of what her pictures look like - she was actually awake. It was just too bright for her.

We increased her milk intake on the pump to 20 mLs an hour on Christmas Eve. She seems to be handling it pretty well. Hopefully that will get some more weight on her.

Saturday, December 25, 2010

Merry Christmas from Lilly!

Merry Christmas!

My very best Christmas present today was having Lilly with us! The Lord has been so good and merciful to us. :)

We had a nice quiet Christmas at home today. (First picture) Lilly was sleeping so soundly when we were ready to open presents that we just let her sleep.

Lilly's presents from us were a smocked dress (Petit Ami dresses on Ebay are the best!) and a silver teething ring, shaped like a duck.

I recently read that silver has anti-bacterial properties and figure Lilly needs all the help she can get, since she does not have a good immune system. Here is a brief description: )

Every year I buy each of my children their own Christmas tree ornament so that one day they'll have a special collection when they start their own family. I couldn't leave Lilly out of course and I got her an ornament of an angel holding a baby.

I carried the angel theme over to her Christmas stocking, pictured here. I call Lilly my "earth angel."

The last two pictures today show Lilly with her new silver teether. She still clenches her hands tight enough that it's easy to get her to hold things like the teether. Plus I held it to her mouth several times today and she really enjoyed sucking on the duck's tail.

"Now there were in the same country shepherds living out in the fields, keeping watch over their flock by night. And behold, an angel of the Lord stood before them, and the glory of the Lord shone around them, and they were greatly afraid. Then the angel said to them, “Do not be afraid, for behold, I bring you good tidings of great joy which will be to all people.
For there is born to you this day in the city of David a Savior, who is Christ the Lord. And this will be the sign to you: You will find a Babe wrapped in swaddling cloths, lying in a manger.” And suddenly there was with the angel a multitude of the heavenly host praising God and saying: “ Glory to God in the highest, And on earth peace, goodwill toward men!” - Luke 2:8-14

Thursday, December 23, 2010

Sneaky Lilly's newest tactic

Weight check - 7 lbs. 4 oz. (same weight as last week but we have a new scale now so I don't know if it's calibrated the same or if she really just didn't gain).

In today's two pictures, Lilly is wearing a really cute Snoopy Christmas dress my aunt made her. What's extra cute about this dress is that my aunt also made one for Lilly's big sister and her Kewpie doll, and Lilly's two girl cousins. We lined up all 4 girls tonight (we forgot Kewpie!) and got some pictures. But wow - it is hard to get a good picture when there's lots of little kids in the group! Someone is always squirming, making a face, etc.

Thursday is the current "tube changing day." I pulled Lilly's NG tube out this morning, gave her a bath, then laid her down so she could take a nap. My current new tube insertion strategy is to put a new tube in her while she's sleeping because it is so easy then. (She really fights tube insertion if she's awake and has figured out how to push it out when I'm trying to push it down in her.) I'm afraid Lilly must have figured out my plan because she stayed awake for 7 hours! (A first I think.) She only dozed off once and the awoke full force once the tube touched her. I threw my plan out the window and tried a few times throughout the morning/afternoon but it just didn't work until she finally was so exhausted she was falling asleep.

It was pretty frustrating especially knowing she wasn't being fed normally during that time. I was imagining the weight falling off her. She did seem to get hungry after awhile. She ended up taking a tiny amount through a bottle and even a tiny amount nursing (for the first time ever). That reminded me that I do need to work with her on those two methods as we really pray she'll feed normally after her surgery. I admit I haven't been very dedicated to it though because she either doesn't seem interested or else spits up after.

I certainly won't ever take a baby feeding normally for granted ever again!

We prayed about all this several times today - together and individually. I admit - I was getting very frustrated with God not doing something to help me the way I wanted very quickly. But perhaps, He was trying to show me the importance of practicing with Lilly to teach her to eat normally.

"Wait on the LORD; Be of good courage, And He shall strengthen your heart; Wait, I say, on the LORD!" - Psalm 27:14

Tuesday, December 21, 2010

Gingham girls

A co-worker of my husband noticed Lilly wearing the gingham Christmas dress in an earlier post. She sweetly passed on her own daughter's gingham dress to my daughter T., so that T. would have a dress to match Lilly. (T. is obsessed with matching Lilly so she loved this!) Check out Lilly's double chin in the picture! How can a baby this small have a double chin??!!

In my last post I mentioned Lilly's "bouncing eyes" (where she has trouble focusing at times). A mama of a Trisomy 18 daughter (19 months old) e-mailed me to say her daughter used to have that problem but that she didn't anymore. That was good to hear!

The Christmas season always seems to be the busiest time of the year. I had Lilly to help me this year. She patiently sat for several hours with me as I worked on Christmas cards. (Lilly now fits nicely in the moby wrap which is much more comfy for me than the ring sling.)

My daughter T. and I like to follow the blogs of several little T-18 girls. T. commented this evening that there seem to be more girl T-18 babies that survive than boys. She is absolutely right. I'm not sure why that is, but it is a fact.

Saturday, December 18, 2010

Focus ... steady ... bullseye ...

Weight check = not sure. We're "between scales" right now. Should be able to start checking again early next week.

My sister-in-law was over briefly this afternoon and commented on Lilly's eyes and how they shook. (I don't remember if I ever mentioned this on the blog before, so I thought I would explain it.) I call them "bouncing eyes." Sometimes she focuses well and holds her eyes steady. Other times her eyes "bounce" up and down rapidly as she looks at something. (Very small up and down movements.)

I'm trying to help her practice focusing her eyes more by giving her things to look at. For example, I recently printed off several shooting targets for her. It's amazing how much she enjoys studying the targets. She will look intently at them for 30 minutes at a time. This picture shows her looking at her favorite target.

Because of the Trisomy 18, Lilly is developmentally delayed in most things. But Lord willing, she'll get that eye thing worked out before too much longer.

Today I found the most beautiful little red velvety dress for Lilly at the thrift shop. (Laura Ashley brand.) It was only 50 cents! I couldn't believe it as it would easily cost $30 in a regular store. It's too big for her now but it will hopefully fit her next winter. I was just so excited about my bargain and felt elated as I left the thrift shop. I realized later that part of my joy in my purchase is that I bought something for Lilly to use in the future. Ever since I found out she had Trisomy 18, I have been very hesitant to buy anything that she can't use right NOW. But today I realized that I no longer have that constant fear that she's getting ready to die. It is true I have no idea how long she will be with us. But that dark shadow just isn't so oppressing anymore. (Thank you Lord!)

"The Lord God is our light and protector. He gives us grace and glory. No good thing will He withhold from those who do what is right. O Lord Almighty, happy are those who trust in you!" - Psalm 84:11-12

Monday, December 13, 2010

The happy seat

Weight check = 7 lbs. 4.5 ozs.

A couple things make Lilly consistently smile. The first is her daddy. The second is being in her bouncy seat. Hanging over her seat on an arch is a stuffed snail, turtle, and musical frog. Whenever we put her in this seat she just starts smiling.

This is so exciting to me because I can see the recognition in her eyes when she sees the hanging animals. And since we don't know exactly what's going on in her brain, it's a great sign.

When Lilly was in the hospital in Florida, I spoke by phone to a local woman that was pregnant with a trisomy 18 baby. Today I learned that she lost the baby in utero. News like that is so sobering. There is always the sorrow when a baby dies. But how do you process it when it's a baby that the medical profession has said is "incompatible with life?" Is it a bit of relief mingled with sorrow? Or does it make it all the more sad? Life can be so confusing.

It made me so grateful once again that Lilly is alive and doing so well.

For My thoughts are not your thoughts, Nor are your ways My ways,” says the LORD. “For as the heavens are higher than the earth, So are My ways higher than your ways, And My thoughts than your thoughts. " Isaiah 55:8-9

My 3 Christmas Gifts

My oldest daughter begged for me to post this picture.
As I titled this post I thought about there being parents out there that don't even want their own kids. And there are so many that would give anything for a child, yet can not have one. What a messed up world we live in.
"Come, Lord Jesus ..." Revelation 22:20

Saturday, December 11, 2010

Preparing for Christmas

Today was my favorite annual tradition of the Christmas season. The day we all went to the Christmas Tree Farm and found and cut a tree. It was so wonderful having Lilly with us! I remember shortly after she was born daring to hope that just maybe, the Lord would spare her and she would still be with us at Christmas time. (That is significant to me because so many trisomy 18 babies never even make it 6 months old. She'll be 6 months Jan. 4.)

Today was cold and raining off and on. So I bundled Lilly in several layers. Thankfully the rain stopped long enough for us to find our tree and take some pictures.

In today's second picture Lilly is being a "tree topper angel." As you can see - she slept the whole time!

When we got home we put up our tree lights and I gave the children each their annual Christmas ornament. (I give them each a new one every year so that they'll have their own collection of special ornaments when they move out one day.) I decided Lilly's first ornament would be an angel since she's my earth angel.

Again, I'm just so thankful and thrilled that Lilly is here at this time with us!

"It is good to give thanks to the LORD, And to sing praises to Your name, O Most High; To declare Your lovingkindness in the morning, And Your faithfulness every night, . . . ." - Psalm 92:1-2

Don't do it sneaky Lilly!

Check out Lilly's mischievous face in this first picture and what her hand is touching. The second picture shows her firmly grasping the NG tube. She has been working really hard lately to pull it out. I often have to move her hand away from her face as she rubs on the tube and tape, and hooks the tube if she can.

Lilly has pulled out her tube a several times now. She does not like that tube! (I don't blame her.) It's quite traumatic for her to pull it out and then have me put one right back in. (And the last time I did it, she was fighting it and the whole thing was traumatic on her daddy who was watching.)

We had something weird happen last week. The pump didn't seem to be pushing the milk through the milk tube correctly (there were lots of gaps). In the NG tube (hooked to the milk tube) it looked like stomach acid was backing up into it. The pump would try to forward the milk but it would stop and the yellow stuff from in Lilly would come back up reversing things. Yuck. I changed the milk bag and NG tube and then everything worked properly.

"Tube Changing Day" is currently Mondays and I don't appreciate Lilly "helping" by pulling it out earlier. I'm really hoping that I'll get to do the rest of the tube changes when she's napping since I've found that it's incredibly easy to do when she's relaxed. Because if she's awake and feisty then I really need supernatural help!

"God is our refuge and strength, A very present help in trouble. Therefore we will not fear, Even though the earth be removed, And though the mountains be carried into the midst of the sea;" [and NG tubes need changing!] - Psalm 46:1-2

Thursday, December 9, 2010

She's growing!

My oldest daughter got to dress Lilly today. She loves to put bows in Lilly's hair. It's so cute but doesn't stay in too long. Sadly Lilly's hair isn't as thick as it once was. We can actually see where she's rubbed hair off. (Hair on the changing table and on her bouncy seat.)

Lilly had a checkup with her pediatrician today. The nurse and the doctor are quite proud of how Lilly is growing. Her height is 20.5 inches, weight 7 lbs., and head circumference 36.5 cm. (Yay - that means her brain is growing!) The doctor said she had talked to Lilly's cardiologist this week and they are both excited to see what going to happen with Lilly.

We've had a couple people ask about Lilly's hospital bills. So far Samaritan Ministries, our health insurance alternative, is covering all the bills. We seem to be getting reimbursement checks from Samaritan members in the mail almost daily. Almost every check has a card, prayer, and/or scripture with it. I really like this quote from Charles Spurgeon on a card today:

"Our Lord, who walked among the sick, still dispenses His healing touch. The earth is full of souls healed by our beloved Physician."

Tuesday, December 7, 2010

7 lbs.!! 7 lbs.!! 7 lbs.!!

Weight check = 7 lbs. 0.5 oz. !!!!!!

"Give thanks to the Lord, for He is so good. His faithful love endures forever." 2 Chronicles 5:13

I really feel like Lilly has reached a huge milestone by finally hitting 7 lbs.! I admit I've been getting frustrated because her weight gain seems to have really slowed down. (I suppose that's a reason why doctors say trisomy 18 children "fail to thrive.") But the other day I was reminded by Ann Barnes, the author of a care book for families of trisomy 18 children (Care of the Infant and Child with Trisomy 18 or Trisomy 13 - available from ) that it's normal for these babies to gain weight slowly. In fact, her precious T-18 daughter, weighed about 5 lbs. at birth and it took her a year to gain 10 lbs. (Megan lived almost 20 years! How incredibly encouraging is that?!)

Though Lilly still holds her hands constantly clenched, other than sticking up her ring fingers at times, she is slowly loosening them some. For the past few days she has been sticking up the last 3 fingers on her left hand at times. I still like to put her "diplomas" (rolled up washcloth bits) in her hands to stretch her fingers and give her palms a break, but she drops them a lot now. A good sign!

I've made a discovery about inserting Lilly's NG tube. If she's sound asleep I can easily slip the old one out and the new one in without her ever waking. However if she's awake and fussing - then it is really hard to do. So from now one, when I have the option, I will change it during one of her naps.

In today's pictures, Lilly is wearing the apple hat hand and Mary Jane's knitted by K, available for purchase from:

Sunday, December 5, 2010

The Christmas Holly Hobbie

Many people thought Lilly looked like a baby doll today. (Or as Lilly's sister said - she looked like "Holly Hobbie.") The camera/lighting does not do justice to how cute this red checked Christmas dress looks on her.

One of my new friends - A., that I met through this blog, loaned Lilly two of her daughter's Christmas dresses. This is one. It's a preemie size and thankfully it is really about too small!

I think the reason Lilly didn't gain weight this week is that she had a growth spurt. This morning I packed up all her sleepers that were "newborn" size. She's now officially in size 0-3 months. We increased the amount of milk she is getting yesterday and thankfully she's handling it well this time.

Lilly's red knitted Mary Jane's were hand knitted by my friend K. She sells them on her Etsy website:

Saturday, December 4, 2010

Happy 5 month birthday, Lilly!

Lilly is 5 months old today! I feel so much joy and relief that I feel like bursting into tears.

To make today extra special for her, God sent snow! Great big wonderful snowflakes. When it started, I grabbed Lilly, wrapped her in her quilt, and put a hat on her and dashed out the door. I've learned that where we live it can start snowing and then stop by the time you get your jacket and gloves on. Unfortunately you can't see the snow in this picture, but it was snowing. It finally started sticking after awhile but there was no accumulation.

Lilly doesn't seem to have gained any weight this week, so this morning my husband programmed the feed rate on her pump to 19 milliliters an hour. That's only an increase of one milliliter, but even tiny amounts can really upset Lilly's tummy. Lord willing, she will be able to handle this amount now. Gotta get more weight on her!

Friday, December 3, 2010

Bundling up and banquets

Here are several pictures from yesterday.

We went for our after lunch walk and it was in the upper 40s. I have trouble figuring out how much to bundle little Lilly up when it's cold out and how many blankets to tuck around her in the stroller. So whenever we get home I like to take her inside and check how her skin feels. Too warm or too cold - then I can adjust for next time.

Lilly loves her stroller rides which is great because we all need the fresh air and I need the exercise. We live in a great neighborhood for walking, which is a blessing. I'm not the type that would regularly drive somewhere else to walk.

In the last two pictures, Lilly and big sister are dressed up for sister's annual Keepers At Home banquet. They even have on matching socks, courtesy of a co-worker of my husband. (Keepers At Home is like a club. We meet with our group of homeschooling moms and daughters once a month a learn a new skill.)

Lilly is also wearing the cutest little knitted Mary Janes. :) They were knitted by my friend K. (who made my "Lilly Bag"). K. sells black and also red knitted Mary Janes at her Etsy shop, where all profits go to help orphans.

Tuesday, November 30, 2010

My "Lilly Bag"

Shortly before Lilly's birth I bought a tote bag from my sweet friend K. I had actually bought one for my oldest daughter earlier as a gift. She loved the tote bag so much and we found it was very sturdy. So I decided I wanted one too. K. let me look through her stacks of material to decide what I liked best. For some reason I was pulled to a print with American flags and cowboys. I have no idea why other than I liked old stories about cowboys. But I took the bag home and decided I would pack some of my stuff for the hospital in it, in preparation for Lilly's birth.

Lilly was due June 17 but held off and made her entrance into the world on July 4. (She decided that would be her "Independence Day.") As my husband picked up my tote bag at the hospital for me, I suddenly smiled at the American flags all over the bag. It suddenly seemed so fitting when I thought of the bag with the date of Lilly's birth. I dubbed the bag my "Lilly Bag."

When Lilly spent her 23 days in the hospital in Fla., every day I went to the hospital and I had my "Lilly Bag" with me. It brought me comfort in a funny way. Each morning I packed that bag full of books and my giant 3-ring binder full of Lilly's medical notes. It held up great.

When we got home I told my friend K. that I'd like to buy some more from her. One for my son, one for Lilly, and one extra. Once again I sat down with K.'s big stack of material. So many wonderful choices! However Lilly's bag was the easiest to pick. The material has a pond scene with LILY pads, flowers, butterflies, etc. And the lining is purple with dragonflies.

Now one of the very best things about buying a tote bag from K. is that all profits go to benefit orphans and adoption. She sells the bags for a little business she has called "Crafting Adoptions." Every cent of the profits she makes goes to support several orphanages, including one for HIV+ children. Crafting Adoption's goal is to help finance as many adoptions as possible. K. has a special place in her heart for orphans as she and her husband adopted a precious special needs boy several years ago. They are planning to adopt more children in the future.

K. has an Etsy shop where she sells her tote bags. (She has a lot of material for tote bags not posted.) She also also knits and sells baby hats and shoes (watch my blog for pictures of Lilly modeling some of these items soon!) and warm and cold therapy bags. And if you live in this area, she bakes and sells the most delicious pies, cakes, and brownie and muffin mixes. Yum ... I'm thinking now of her cinnamon rolls! :P

Please check out K.'s Etsy shop at:

It's so satisfying to buy useful items and help support orphans and adoptions too! :)

"Pure and undefiled religion before God and the Father is this: to visit orphans and widows in their trouble, . . . ." James 1:27

Monday, November 29, 2010

Cardiologist visit

Weight check = 6 lbs. 14.6 ozs.
Lilly saw her cardiologist this afternoon. He was very pleased with her weight gain. It's slow but steady. He said the pulmonary artery band on her heart is still a good fit. (For some reason I had envisioned Lilly needing the open heart surgery around Christmas time. But it may very well be springtime at this rate.)

The scar on Lilly's chest (where she was cut open for the band) is healing nicely.

Lilly seems to have a lot of deep congestion in her head at times. The cardiologist said it could be caused by the NG tube, which can irritate the nose and throat.

Today's last picture shows Lilly with her knuckle in her mouth. She's getting pretty good at getting that knuckle into her mouth. She still doesn't open any fingers except to stick her ring fingers straight out at times. But the last three fingers are loosening up some.

Lilly has been quite chatty the past few days. What a blessing it is to hear her little voice as she coos and talks to us.

"For the LORD knows the way of the righteous," "He shall be like a tree, Planted by the rivers of water, That brings forth its fruit in its season, Whose leaf also shall not wither; And whatever he does shall prosper." Psalm 1:6, 3

Stay back or else!!

Lilly grabbed a hold of her NG tube in this picture. She looks like she's threatening me: "You do what I say or else I'll pull this tube out!!"

She actually did pull her tube out again about midnight this past Saturday night. I was so sleepy it took me a few minutes to figure out why she was crying so much. Then in the dim light I noticed something was wrong with her face. No tube! She was so upset it was quite a traumatic thing to get the tube back in. We were both in tears by the end.

Then horror of horrors - the tube got a clog in it the next day. We tried flushing it with water several times but to no avail. So I had to pull it out and insert another new tube. Thankfully that one went it pretty easily.

Challenges. They grow our character. Right?

Friday, November 26, 2010

Something to smile about

Weight check = 6 lbs. 13 oz.
(Lilly obviously didn't overeat on Thanksgiving!)
I love this picture of Lilly smiling today. She's happy because her daddy is feeling so much better.

Thursday, November 25, 2010

Happy Thanksgiving!

Today was Lilly's first Thanksgiving! And that is what I was most thankful for today. :)

I started a new tradition for my children this year. I had each draw a turkey using their hand. I thought I'd save them each year into a notebook and that it would be fun to watch the size of their hands grow as they got older.

I helped Lilly with her drawing. I managed to get three of her fingers unclenched and down onto the paper. But her forefinger and thumb were just so tightly clenched that I traced them that way. I then decided she wouldn't mind if I colored her turkey for her. That was a fun, quick project on a very busy day.

"Enter his gates with thanksgiving and his courts with praise; give thanks to him and praise his name. For the LORD is good and his love endures forever; his faithfulness continues through all generations." Psalm 100:4-5

Wednesday, November 24, 2010

Happy Thanksgiving Eve

Weight check = 6 lbs. 12.5 oz.

In today's pictures, Lilly is wearing a sweater knitted by a co-worker of my husband and her mother. Lilly gets to wear so many things that talented people make. I feel like I need to make her something too! But there's just that pesky lack of time thing right now.

Lilly was so happy her daddy came home from the hospital tonight. She was fussing when he came in but stopped as soon as she heard his voice. He had the kidney stone removed this afternoon. He had a little trouble breathing on his own afterwards. (Lilly knows about that!) Then he wasn't able to urinate so they finally discharged him tonight with a catheter. (ouch!) He's supposed to call the doctor tomorrow. We'll see what happens next.

This has been a strange year for us! We're the types that are rarely sick. But 3 of the 5 of us have been in the hospital this year.

Please pray for my husband

It's the middle of the night and my husband just went back to the hospital for the kidney stone. (Thankfully my stepdad came to get him so that we didn't need to wake the children.) I have never seen anyone in so much pain and have an all new sympathy for people that have kidney stones. The heavy painkiller that he is on just suddenly stopped working and it didn't help to take another dose. He said he won't leave the hospital until the stone passes.

UPDATE: He just called to say that the hospital is getting ready to release him so he can see the urologist again this morning. They were not helpful yesterday - only told him how to prevent kidney stones. Please pray that they will do something today to break up the stone so it can pass.

UPDATE AGAIN: The urologist told him the stone would not break up on its own so he's scheduled to have a procedure to "blast it" this afternoonat 3:15. He should be able to come home after that. Praise God that he finally got good help today and that it can be taken care of before the Thanksgiving holiday.

Monday, November 22, 2010

It's like giving birth ...

We've had a busy last two days. My husband has a kidney stone. I have never seen him in so much pain. It reminded me of a woman in labor. My mother-in-law, who has had kidney stones, said it really is about as painful as giving birth. Last night my husband couldn't take it any more so he went to the emergency room. My stepdad was our knight in shining armor and took him, so I could stay home with the children. As they were leaving, Lilly was crying and her pump beeping because it was malfunctioning. Then when they walked out the door, my son burst into tears. A few seconds later my oldest daughter was hysterical. It was quite a scene. Thankfully the doctors gave my husband some good drugs and he was able to come home, pain free, later that night. Tomorrow he goes to the urologist as the stone may be too large to pass.

I was reminded what Job said: "Shall we accept good from God, and not trouble?” Job 2:10

Lilly felt like she needed to go to the hospital with her daddy, since he had stayed with her 24/7 when she was in the hospital for 23 days. But we convinced her she needed to stay home and cheer up mama. And she did. Today's picture is from last night. While waiting for my husband to call us with an update, I played the "boo" game with Lilly and she rewarded me with many smiles. (When I say "boo!" and touch my nose to her's, it really makes her smile for some reason. Sometimes she'll make a responsive noise too.)

Speaking of hospitals, I've had a lot of people ask when Lilly will be going back to the hospital for her open heart surgery. It will most likely be when the pulmonary artery band on her heart begins to get too small. (Her cardiologist is monitoring it. She has an appointment with him next Monday.) Or, it could be when she reaches at least 10 pounds. However, as slow as she gains, this seems pretty unrealistic to me. The doctor said that when a baby is at least 10 pounds, they have a much better chance of survival. Plus some under 10 lb. babies end up needing a pacemaker.

Lilly has really been moving her arms a lot more and putting her fist into her mouth. I think that's great. Though this afternoon she managed to hook her NG tube and yank it right out. Ugh. I had a hard time last time I put a new tube in. But thank God, it wasn't bad today.

Here's a tip for treating dry skin: put coconut oil on it. I did this with some horribly dry skin Lilly had over her eyebrows. Soon after putting the coconut oil on, I was able to wipe it off along with most of the dry, scaly skin. One more application and it was all healed.

Saturday, November 20, 2010

Tubes 'n sauce

Let me first say that my toddler has never liked pasta. So tonight when I fixed venison spaghetti (thanks again B. & A.!) I simply gave my son a bowl of meat and sauce. When he noticed my plate, he pointed and said he wanted a "tube" to try. I took me a minute but then I realized he meant the spaghetti noodles! As I looked at them, I realized that a noodle does look a lot like Lilly's NG tube.

When Lilly was four days old, we had a photographer from Now I Lay Me Down To Sleep ( ) come out to the house and take photos of our family with Lilly. (This is a wonderful free service for babies that are not expected to live.) That same photographer came back today and took pictures of us again, including a bunch of Lilly wearing some little angel wings. She looked so beautiful! I can't wait to see the pictures because this photographer does amazing work. (And the prints are the most rich colors I've ever seen.) If you live in our area and need a photographer, I highly recommend him:

Thursday, November 18, 2010

Finally a little more weight gain ...

Weight check = 6 lbs. 11 oz.

Perhaps if Lilly continues gaining weight at the rate she's going, then she'll hit 7 lbs. by the end of the month.

Lilly has a new cousin - baby J. He was born Tuesday which was actually on his due date. He weighs 3.5 ozs. more than Lilly but she's a little longer. Wonder who would win in a wrestling match!

In today's first picture Lilly is wearing a knitted sweater and booties. A co-worker of my husband gave him a whole bag of knitted sweaters and booties. Apparently her grandmother had knitted them for her children but they were too small. So she had saved them until she found a small baby to donate them too. (The fit is pretty good except for arm length.)

The last picture shows my two girls snoozing. It made me laugh to see them this morning. But tonight it's just making me feel sleepy!

Tuesday, November 16, 2010

Jumpers and games

Weight check = 6 lbs. 9.5 oz. (no change)

My oldest daughter deemed today "jumper day." She wanted to wear the jumper that she had made herself and wanted Lilly to match her. She was thrilled that Lilly had been given a little jumper as a gift.

In one of the comments on my last post, a pastor mentioned a premature baby that was not supposed to live. The baby lived. The baby was supposed to be severally mentally disabled. The child is 14 years old and not mentally disabled at all. He noted: "Unfortunately, many doctors do not factor in the Lord's blessings in their diagnoses." I like that. :)

"In his [God's] hand is the life of every creature and the breath of all mankind." Job 12:10

Today Lilly's milk ran out right before we left for my older daughter's piano lesson. Since it was "NG tube changing day," I decided to just detach Lilly from the pump and pull out the old NG tube. It was so freeing to just walk out of the house without the pump and gear! And so wonderful to just sit and hold her at the lesson without worrying about being careful about the tube in her nose. I inserted a new tube when we got home and praise the Lord, it went well.

This evening my husband was holding Lilly and ended up getting a little game going with her. He kept saying the same thing over and over (I don't remember what but it ended with "boo!") and every time he said "boo!" Lilly would make a noise in response. She also smiled quite a few times too, after making her noise. It was so wonderful seeing her interacting like that!