It's been 4 weeks ... how are we doing?

I'd say one of the biggest questions people have for us right now, though some are hesitant to ask, is "how are you doing?" Since so many have asked, I'm sure that there are many out there that are curious but dodn't want to ask. So here's our answer.

We're doing "O.K." In some ways better than we thought we would. But we all miss Lilly so incredibly much. My husband, daughter T., and I all find ourselves just crying "for no reason" sometimes. I'd say usually there's a "Lilly trigger" but not always.

My husband has propped up on his dresser the Lilly posters I made for his door at work when she was born, a Father's Day card I made him from Lilly, and her funeral program.

T. has the peace lily plant that my kids pediatrician sent the day after Lilly died, a starfighter lily that our local florist gave her for free earlier this week, and a few of Lilly's things. (A doll, pair of slippers, blanket, small caterpiller toy.)

I feel like part of me died with Lilly. I can laugh and smile, but honestly the world seems so much less interesting now. Most things just seem so flat. And the days long.

Our son H. has always been a child that models his play after real life things. Lilly's funeral was the third he attended in 6 months. (First my husband's father died, and then his uncle.) So death and funerals are completely normal to him and they have become part of his play. Almost every day now one of his stuffed animals "dies." He turns his stepstool upside down and puts the animal in it for a coffin. He puts a lid on top to close it. And then he often covers it all with a cloth. But usually, a few hours later, whichever stuffed animal died, will "come back to life like Jesus did." Occasionally he asks if Lilly can do that. He tells me things he misses about Lilly.

"Every experience God gives us, every person He puts in our lives, is the preparation for the future that only He can see.'" - Corrie ten Boom (a Christian WWII Holocaust survivor)

Oh - there is one more question that a few brave people have admitted to wondering. Would we like to have another child? ABSOLUTELY!!

Lilly's blenderized diet - where we ended up

In hopes that this post will help someone out there, I wanted to do a final post about Lilly's blenderized real food diet.

On Sunday I gave one of my favorite Lilly resources to a friend at church that has an adopted son with special needs. He got a g-tube shortly before Lilly did and his mama has been looking into the real food diet. The resource is the book Homemade Blended Formula Handbook. (Available from www.mealtimenotions.com Click the book title and it will take you directly to the webpage that describes the book, and where you can order it.)


First, I would recommend the "real foods blenderized diet" to anyone that has a g-tube fed child. Second, if you decide to pursue this - get ready for a lot of questions from dieticians and medical doctors. Going this route is just not the norm! Formula - no matter the age - is. Third, if you do convince people that your child is thriving on a blenderized diet, they may say "but you can't because it will clog the g-tube button!" Lilly's clogged maybe three times. That was because I hadn't pureed the food long enough. (You need a Vita-Mix and you need to just let it go on high speed for awhile.) I was able to easily get the clog out with tweezers or a syringe of water. Also note that Lilly's MIC-KEY button was one of the smallest - if not the smallest - there is.


Lilly had been on breastmilk since day one. We tried adding in formula for a few months to add calories but finally quit because it just messed up her digestive system and gave her stomach aches and gas. But, like all children, she finally got to a point where she needed more than just breastmilk.


I have earlier posts on how I introduced her to this diet. So I won't go over all that again. I just want to stress that on this diet, she thrived. Her weight gain, which had stopped, slowly began going up again. She seemed to have more energy. Her digestive system worked well and she rarely had gas issues. She was content. She was doing more physically.


I recorded everything in little notebooks everytime I fed her. It's neat now reading back over what she had in a day. I wrote everything down for two reasons. First was for me, so that I could keep track of what I was feeding in a day, or couple of days, to be sure there was variety. Second, I wanted to be able to show the doctors and dieticians that I took this very seriously and put a lot of thought into it.



For a typical day, Lilly was on continuous feed, via a feeding pump, overnight. During the day, every 1 to 1.5 hrs. or so (except nap time), she would get one ounce of one of the below foods, or two mixed (organic whenever possible, veggies were steamed) :

- coconut oil (good fat - she loved to eat this one by mouth)
- avocado
- chicken broth (homemade with organic chicken bones and parts like chicken feet)
- yogurt (homemade)
- spinach with orange juice (needed to be combined for better absorption of the iron)
- dark chocolate (XOCAI) (super high in antioxidants and many other things - see this article) (I usually combined this with avocado)
- banana
- cauliflower
- congee (slow cooked brown rice with salt, ginger, cinnamon)
- eggs
- apple
- rice cereal with apple
- squash
- carrots
- peas
- sweet potato
- clementine
- green beans
- blueberries
- broccoli
- kefir


I also gave Lilly an ounce of water frequently. Water is good to give about 30 minutes before a meal, as it should be digested by the time you feed them the food. I usually mixed VitAloe and Stemkine and spirulina in with her water. I called it her Super Water! VitAloe was for immune boosting, StemKine was for regenerating damaged tissues (it supports bone marrow to produce more stem cells), and spirulina powder (immune boosting, phytonutrients, source of protein).

In addition to the three above supplements, I also gave her (every day):


- blackstrap molasses (for iron - Lilly was anemic at times, so this was important)
- probiotic (for digestion) (Country Life's Maxi Baby dophilus)
- kelp powder (iodine)
- beet powder (high in iron, potassium, magnesium plus many other benefits)
- mullein infusions (high in iron, great for respiratory issues, pulmonary diseases)
- Brewers Yeast (vitamins, minerals, proteins, immune boosting - good list here)
- Omega-3 DHA liquid (Dr. Sears brand) (brain power!)

I think that is it! The only other thing, was Herbs for Kids Echinacea/Astragalus, when needed. That is a great immune booster. I use that for all my kids if it sounds like they're starting to come down with something, or I know they've been exposed to something.

The day Lilly passed away I had pureed chick peas that morning for her to try. It was in the freezer in ice cube trays until recently. I'm still disappointed I didn't get to try that with her. Even though all this was more work that popping a can open, I really really enjoyed it.

I saw in my notebook that Lilly's very last meal was spinach/orange juice. I wish it had been chocolate and coconut oil!

A quick update on my friend K. - the doctors finally determined she had a congenital heart defect. She is to have surgery this afternoon to put in a pacemaker and defibrillator. If all goes well she will go home soon! Amazing! It looked like she wasn't even going to live for awhile. God really cares about us and answers prayer!

"If anyone acknowledges that Jesus is the Son of God, God lives in them and they in God. And so we know and rely on the love God has for us. God is love. Whoever lives in love lives in God, and God in them." - 1 John 4:15-16

Packing away Lilly's sweet clothing

The Sunday before Lilly went to heaven, we were surprised by a visit from our local chicken farmer. His wife was with him and she had made Lilly an adorable fleece blanket. We were so touched by her kindness! Sadly I never got a picture of Lilly wrapped in the blanket, but I took a picture of T. and H. wrapped together in it in front of Lilly's memorial tree. There is something irresistible about the softness of this blanket and we all enjoy using it, thinking of Lilly when we wrap up.

By the way, if you live in our area and want some delicious organic chicken eggs and/or organic chicken, contact the Triple T Ranch and tell them Lilly's mama referred you! We easily eat 4 or 5 dozen eggs a month and we buy one whole chicken a month. I really enjoy using the bones to make chicken broth. (I gave the broth to Lilly a lot, both plain and mixed in with her purees.) I even learned to use chicken feet to make the broth more nutritious.

Today I finally made myself pack away most of Lilly's clothes. Most of her regular clothes were in a changing table that was in our office/schoolroom. We decided to put the table in the attic. So that meant the clothing needed to come out. I packed all those wonderful little outfits Lilly wore into a big tote bin with a lid. She also had some clothes in the dresser she shared with my son so I packed up those too. However I left all the beautiful dresses she wore on Sundays in the closet. All of them - from preemie size up to 9 months are going to stay sweetly hanging there until I get a nice rack to hang them up on my wall on.

It was so sweet holding and folding Lilly's clothes. So many good memories with most of the outfits. It made me long for another little girl so I could dress her in Lilly's clothes. Amazingly I only cried once and by the end I was even smiling. However at dinner tonight, we had on a CD that we got from Faith's family (another homeschooling Christian family with a daughter with Trisomy 18) and Bart Millard's rendition of "My Jesus I Love Thee" came on and before I knew it I was crying. (It was one of the songs we sung at Lilly's funeral.)

From what I hear though, people that mourn will just start crying at unexpected times. Hmmm. I'm not sure what to think of that.

Thank you to everyone that has been praying for my friend K.M. The Lord has been listening! Her heart function is amazingly almost back to normal! All on it's own! She is still in the hospital and it seems much of the trouble she is having now is from medications. The doctors still don't know what caused her terrible heart problem but I don't think they're talking about a transplant anymore. Please pray they figure it out. And for encouragement for K. and her family. Especially in the wee hours of the night. K. is struggling then. I remember nights were often so hard for Lilly in the hospital too.

Matthew Henry, a theologian living in the later 1600s and early 1700s, wrote, "God has a bottle and a book for his people's tears, both those for their sins and those for their afflictions. He observes them with compassion and tender concern; he is afflicted in their afflictions, and knows their souls in adversity. Paul was mindful of Timothy's tears (2 Timothy 1:4), and God will not forget the sorrows of his people. God will comfort his people according to the time wherein he has afflicted them, and give to those to reap in joy who sowed in tears. What was sown a tear will come up a pearl."

It's been 3 weeks today

Thank you to whoever the anonymous person is that left the little angel ornament on my husband's desk at work. It's so cute and looks great on Lilly's memory tree! :)

It was 3 weeks ago today that Lilly went to be with Jesus. It feels like forever ago. At times I find myself still feeling puzzled over what exactly happened. We knew Lilly was sick but we really thought she was getting better. She was on an antibiotic. Her pulse ox numbers were good, although I admit I didn't check her the last day or two because they had been good and her breathing sounded normal. She was eating and sleeping well. She was cheerful and energetic. On the day she died her nose had cleared up. She did have a new cough I didn't like but she only coughed a couple times the whole day! And she had recently had her heart fixed. Considering she had almost died 5 times before, and had pulled through, we just weren't expecting it this time. And so I think "just what happened?!" I am curious from a medical standpoint.

Yet at the same time it just doesn't really matter. I am just glad for Lilly, and for us, that when God decided it was her time He took her so incredibly gently.

"Because of the LORD’s great love we are not consumed, for his compassions never fail." - Lamentations 3:22

Eating with the Lilly Collage

Today Lilly would have been 1 1/2 years old. This morning I asked Jesus to tell her "happy birthday" for me and that "mamma loves her Lilly!"

Happy 17 mos. to Giuliana! Thank you J. for emailing me this morning, remembering Lilly's birthday!

In the past, whenever we ate a meal, if Lilly was awake we put her in her bouncy seat on the table. (It was where the advent wreath is in the picture.) She enjoyed being part of the meal and would play with her toys hanging across the bouncy and we would all cheer for her whenever she pulled on the frog to make music.

Right after Lilly died, the bouncy seat quickly came down, much to our son's disappointment. It was more for practical reasons though - so many people were coming through the house and we needed the room at the table to feed people. However we all missed Lilly with us at the table. So my husband hung the picture collage we made of Lilly for her viewing and funeral on the wall by the table. We enjoy looking at this while we eat now. My only regret about the photo collage is that there are not any pictures of Lilly in her last two months of life. I simply haven't gotten the pictures developed yet.

There are a number of larger pictures in the collage that are all from a photo session we did with Lilly for her 1st birthday. I started worrying the other day about several, and that if they faded from the sun then I wouldn't have them anymore. So I contacted our photographer to see about buying the images of them on CD from him. He kindly emailed them to me for free! This photographer came to our house on three separate occasions to photograph the family and Lilly. He is a volunteer photograph for Now I Lay Me Down To Sleep, and has his own side business. If you live in our area, I definitely recommend him! http://www.steverubinphotography.com/

I'm so grateful that I live in the age of digital cameras! I must have a couple thousand of pictures of Lilly and that makes me so happy.

"Be strong and courageous. . . . [T]he LORD your God goes with you; he will never leave you nor forsake you.” - Deuteronomy 31:6

Full but empty

This is our second day of being back to "normal." My husband is back at his job. We're homeschooling again, preschool and 5th grade. Doing chores. Taking walks. Even reading (something I didn't do much of while Lilly was alive, except during hospital stays).

I've never been one to get bored. In addition to schooling and chores, I am a "project queen." I have enough projects that I'm either working on - or have in my mind or on lists -that could keep me busy for many many years. So our days remain full.

But there are gaps. BIG GAPS. The Lilly gaps. She's not here filling up our days and nights anymore to overflowing. It just feels so empty.

Our days are like her bed. (Today's picture) Full yet empty.

Lilly's bed has lots of things in it: the sock monkey pajamas she was wearing when she died, the heart flannel blanket I wrapped her in when I found her dead, her wool diaper cover which I can't bring myself to wash, her blankets I covered her with the nights before she died, her Lilly-Firecracker-Quilt, her small yellow pillow that she liked her top leg on (she slept on her side), her blue hand splints, her bigger pink pillow that she laid on on our bed each night to watch the ceiling fan and play, and her "Lilly colored" stuffed sock monkey. Lots of things. But no Lilly.

At least not now. But one day we'll be with her again!

"But in keeping with his promise we are looking forward to a new heaven and a new earth, the home of righteousness." - 2 Peter 3:13

Decorating Lilly's Memorial Tree

Happy new year! I look forward to this year though things feel pretty empty right now.

Today we decorated Lilly's artificial tree, which we had bought for her Christmas present since she loved our big Christmas tree so much. We had decided to go ahead and set the tree up anyway, making it a Lilly memorial tree. We thought we would do a different theme on the tree each month.

Every January will be an angel theme. I gathered up Lilly's angel ornaments that I had given her plus several angel ornaments I had.


Then I added two angel ornaments that we got for Christmas this year. We have been so excited that several people have contributed angel ornaments to Lilly's tree. We have ornaments up from six people and three more are sending angels! Thank you so much to everyone that has contributed - it really touched our hearts.

Now I'm considering several ideas I have to make a tree skirt.

Thank you everyone that has asked me about, and or prayed for, my friend K.M. that I mentioned in my last blog post. Doctors were saying for awhile that K. was going to need a heart transplant in order to survive. Now I am not sure if that is still thought necessary. (I'm getting info. from several sources so I'm trying to piece it all together.) Last I heard is that K. was off the ventilator and responsive. They are thinking the cause of all this is a really bad virus. Whatever the case though, K. is still in danger and needs frequent prayers.


I was saddened to get news from another friend that her son passed away a few days ago. M.B. was pregnant with a boy with Trisomy 18 that was actually due today. He went to heaven, a few hours before she gave birth. His funeral was yesterday. M. said she was pleased with the service and her son looked very "peaceful." I am imagining Lilly in heaven with him playing with him and telling him all about the beautiful jewelry that his mom made her, including the bracelet and necklace that she was buried in. You can find this sweet woman's jewelry for sale on Etsy at: http://www.etsy.com/people/SixSistersBeadworks

Tomorrow is back to routine for us for the first time since Lilly passed away. We're not looking forward to it, and yet we are. I have been dreading my husband leaving to go back to work. But today I have felt at peace about it. And our loving son has told me he will be my Lilly when I want him to be. :) I thank God for my family. And for all of you who so faithfully continue to lift us up in prayer.


"Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." - Matthew 6:34