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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

Saturday, July 30, 2011

New blog background and header

Lilly's blog has a new look, thanks to my sister-in-law K.H. (Actually both of my sisters-in-law have the same initials - for those that know them, this is the one that lives in a different state than me.) I had been wanting something that was special for Lilly and asked K. about it and she took my ideas and made them better. The Easter lily flower at the top is my favorite kind of lily - pure and white like my Lilly. The red, white, and blue bows on the sides represent Lilly's birthday - which is the 4th of July. And the background is blue because that is my favorite color. :)

Though I loved my Lilly picture at the top that I had - she had the best smile! - it was time for a new one. One without the NG tube in her nose. I do need another picture up of Lilly smiling and hope to have a good one to use as her header picture soon. UPDATE: I put the smiling picture at the bottom of this blog page.

Thanks again K.!

Friday, July 29, 2011

Figuring out the chocolate and Karo tip

OK, so I got Lilly the super healthy chocolate. (See my July 12 post ) My other two children and I had to do a taste test first, to makes sure it was suitable for Lilly. YUM! Passed the test. So I've been melting it for Lilly. What does Lilly think? Well - she's not in love with it. But she doesn't dislike it either. She prefers eating it off my finger rather than from a spoon. I think the main issue with the chocolate is that it is pretty thick when melted. Not too easy for her to work with. Thought it's good to practice. I've been experimenting with mixing in breastmilk with it to try and make the consistency easier for her.

One thing that happens every time is that she seems to get some stuck on the roof of her mouth. She has a very high roof, so it can be quite awhile before it all gets swallowed, or drooled out.

On a different note, the wife of one of my nephews told me about an old remedy for baby constipation. (Unfortunately quite a problem in the Trisomy 18 world.) A capful of Karo syrup! I couldn't believe I was buying corn syrup, since I try to avoid it in all food I buy, but I figured it was better than the medication usually prescribed. Lilly got a little bit this morning (added into her milk) and 5 hours later - major relief. Ha!

Thursday, July 28, 2011

Button buddies and pediatrician visit

Weight check = 12 lbs. 7 ozs.
Height check = 24.5 inches

Lilly had a check up with her pediatrician today. She's doing really well overall and everyone in the office was thrilled she made it to one year old. Her pediatrician requested a picture of Lilly to hang up in the office.

I've been thinking ahead to the dreaded winter months of super germs everywhere and anyone reading this blog for long knows how hard that can be on Lilly. (She was hospitalized twice this year for viruses, and almost died both times.)

So I asked about getting Lilly the RSV series of shots which starts around October and goes for several months. These shots are ridiculously priced - about $1000 PER shot! But if it really does protect her from the viruses, it is worth it. And it would save a ton of money from hospitalizations. (The two viruses she had been hospitalized for combined totalled @ $150,000.)

I also have found many parents of Trisomy 18 children have nebrulizers and use them for breathing treatments for their children when their kids get colds, or are really congested. They say if they use these, then they can often nip an illness in the bud. We want to do that too! So I am going to buy a nebrulizer and I got a perscription today for Xopenex to use with it..

Thanks to a tip from my cousin M., I got something that's working really well for Lilly called "button buddies." (Today's pictures) These little cloth circles go neatly around her g-tube (they velcro close) and work sooooo much better than gauze and tape. (Lilly often has a little stomach leakage so we need something to absorb it and keep it off her clothes.) They are soft and ticker than the gauze I used so I am hoping they'll cut down on her granulation too. (Growth of skin around the opening to the stomach.) Plus they're washable! So it will be a money saver, just like Lilly's cloth diapers. I got these from:

Speaking of g-tubes, ever since Lilly had her's placed in May, she has done a lot of spitting up. (Which she rarely did before.) She was spitting up several times a day and it was a lot. Plus her tummy seemed uncomfortable. We finally cut the rate back on her feeding pump and now she's not spitting up at all. (I was actually afraid to do this initially because it's she already gains weight so slowly. But I reasoned if she's keeping everything in - instead of spitting up a lot of milk - then that is better for weight gain.) I have been pondering why this was happening, since she handeled the higher feed rate with her NG tube without problems, when it finally hit me that the balloon at the end of the g-tube (which is inflated with water in her stomach to keep it from coming out) takes up a lot more room in her tiny tummy than the skinny NG tube did. Oh .... that makes sense ...

Lilly is in my lap and just happily finished off a spoonful of coconut oil. It gives us such joy to see her happy and feeling well. Her nurse today commented that Lilly is a lot closer to Jesus than we'll ever be. That's the truth!

"For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, 39 neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord." - Romans 8:38-39

Monday, July 25, 2011

Leak proof diaper cover and O.T. evaluation

Lilly is modeling her latest diaper cover in today's picture. This is a wool diaper cover. I had forgotten that these existed until my friend H.B. showed me one she used for her son. She said they didn't have the overnight leaking problem when she put it on him. So I ordered one for Lilly, in a deep purple color. We've used it every night on her for over a week now and I am thrilled that she has not leaked at all! Even sleeping 11 hours straight on continuous feed. I can't tell you how happy this makes me! No more washing nightgown and bedding almost every day.

Wool diaper covers can be pretty pricey, but this one is by Disana (I think from Germany?) and is a good price. If you're interested go to:

And if you're new to using wool diaper covers, note that you have to wash them a little differently than regular cloth diapers and covers. See: . You don't have to wash them daily - just air out!

Last Wednesday, Lilly had an evaluation for occupational therapy. I told her I was most interested in getting Lilly some therapy for her hands (to not clench so much) and to work with her on mouth feeding. She agreed that Lilly could benefit from therapy for her hands and suggested "low profile hand splinting" such as a neoprene glove. (A glove that fits over Lilly's palm.) The therapist also wanted to watch how Lilly ate so I fed Lilly coconut oil. She said that Lilly managed the feeding very well. I was happy to hear that.

Lilly's coordinator is now collecting information on occupational therapists who said they would be willing to work with Lilly. Then I will decide which one we want to try.

Speaking of feeding, Lilly's special super healthy chocolate came right before we left town. I have it on my to-do list to try and feed some to her tomorrow. I think I ought to try it too. :)

"If you then, being evil, know how to give good gifts to your children, how much more will your Father who is in heaven give good things to those who ask Him!" - Matthew 7:11

Wednesday, July 20, 2011

Back home

Weight check = 12 lbs. 6 oz.

We're back home now after spending some time with my husband's family. Friday was my father-in-law's funeral. My husband gave the Eulogy and did a fantastic job describing Pop and the strong, generous, and spiritual man that he was. Our Lilly's full name is "Lillian Eva" and she was named after two relatives. "Eva" was Pop's mother, who died when he was a little boy. "Lillian" was my great-grandmother.

Shortly before we left town, I had a moment of panic because Lilly's entire g-tube got yanked out! My daughter T. was holding Lilly and lifted her up to stand her on my desk. Lilly suddenly began crying loudly from pain. T. took her back down and Lilly soon calmed down. Shortly after T. brought Lilly to me and said Lilly had leaked all over her. I noticed Lilly's onsie was soaked. Then horror of horrors - when I opened it the whole g-tube (with water balloon still inflated) was loose in her onsie. (The water balloon stays inside Lilly's stomach to help keep the whole g-tube from coming out easily.) The open hole to her stomach was staring at me. Lilly herself was staring at me and smiling.

I got out my directions on what to do if this happened. I had to put a "Foley" three inches into her stomach hole, and then inflate it with a little water to keep it from slipping out. (See today's picture.) It was evening so I wasn't sure how easy it would be to reach the surgeon, so I called my friend K.L., who has a little boy with a g-tube. She was so kind to come right over and showed me how to deflate the g-tube's "water balloon", pop part of the tube back in, and then inflate the balloon again with more water. It all went smoothly and we've had no trouble since. Thank you again K. for saving the day! :)

I couldn't help but think of this scripture, after the g-tube mishap, as it applies to so many areas of our lives:

"Two are better than one, because they have a good reward for their toil. For if they fall, one will lift up his fellow. But woe to him who is alone when he falls and has not another to lift him up!" - Ecclesiastes 4:9-10

Monday, July 18, 2011

Lilly's Pop

This afternoon my father-in-law went to be with the Lord. I'm so grateful we got to see him on July 4 - Lilly's 1st birthday - and that he still was able to smile at her then. Pop was a good man and will be greatly missed.

"The LORD gave, and the LORD has taken away; Blessed be the name of the LORD." - Job 1:21

Friday, July 15, 2011

Lights, bells, and whistles

I'm one of those parents that thinks that toys that demand imagination from my children are best. Blocks, dolls, toy cars, lots of craft supplies, etc. I don't generally think noisy flashy toys are good for children's minds.

Enter Lilly's pink laptop.

Shortly before Lilly's birthday I was talking to her physical therapist about toys that would be good for her. I had noticed she paid more attention to toys that had flashing lights and turned towards sounds. So I went looking for toys that flashed and made noises.

I didn't really find anything. But then God blessed us through a sweet mama of a little girl with Trisomy 18, named Emily. (Emily is FIVE years old!!) For Lilly's recent birthday, this mama sent Lilly a pink laptop that has flashing lights and sings and talks. She said that it was Emily's favorite toy.

And now I think it is probably Lilly's too. She really likes when we hold her and put the laptop in her lap and put her hand over the buttons so she can push them. I don't know if she's connected what she's doing yet, but she is quite interested and stays focused for awhile.

So what do I - Mrs. Picky Toy Lady think of the laptop? I love it! I thrills me to see Lilly interested in something and know that for her, this is just the kind of toy she needs.

My son loves to help Lilly push the buttons on the laptop. He likes to play with it by himself too. He likes to tell me he needs to play with "something with a lot of buttons." I usually tell him it's fine for him to play with Lilly's laptop for a little while. He then proceeds to "send e-mails" and "work" for a little while.

I love this last picture of my son holding Lilly's hand. He loves her so much and frequently tells her that during each day.

Lilly got a happy birthday e-mail from B.P., an employee at Focus on the Family. (She is the one that we communicated with for Tammy Tate's booklet "Gift of a Lifetime." You can read a description of the booklet and get the link to order it by going to the right side of my blog and scrolling down.) Lilly is one of the babies pictured in the booklet. B.P. shared a verse that made her think of Lilly:

"Day by day the Lord takes care of the innocent, and they will receive an inheritance that lasts forever." - Psalm 37:18

What a comfort.

Thursday, July 14, 2011

Splish splash!

Lilly had a fun morning. She and her dad and siblings played on the slip 'n slide and she got in her little pool. (Or as we dubbed it - her "lily pad".)

Please pray for Lilly's Pop. He is dying of kidney poisoning. Please pray that the Lord will take him quickly and gently, and for peace for his family. Thank you.

Tuesday, July 12, 2011


Lilly likes chocolate! Oh my goodness - who feeds their baby chocolate? Well my husband did! We were having lunch with friends the other day and there were yummy warm chocolate chip cookies for dessert. My husband put a little chocolate on his finger and touched it to Lilly's lips. (When I was out of the room!)

Well it seems that little Miss Firecracker was quite surprised at first. But then she seemed to think that the chocolate was just fine! After my initial horror, I thought "well - if she eats it then it isn't that bad." Because that would mean that she's eating by mouth. (I feed her a little something everyday but it's really only the coconut oil that she eats easily and seems to enjoy. I'd love her to have some other things she really likes to practice eating by mouth with.)

So yes, I'm thinking of getting Lilly some chocolate to eat. But not just the normal cheap milk chocolate. But super healthy, dark chocolate. Is there such a thing? Yes! I recently read that "cocoa is likely the healthiest vegetable around." What a great claim, huh? If you'd like to read about this, and all the wonderful benefits of cocoa (such as being the ultimate antioxidant food) go to:

(You can order super healthy chocolate at: I haven't actually tried it yet, but just may get some for Lilly.)

Speaking of Lilly, she has been napping since about 10:30 this morning. (It is now 5:00) She obviously needed some extra sleep - but 6.5 hrs.? I can't stand it any longer and am going to wake her up! (I would like her to sleep tonight.) Long naps make me nervous though - is her body trying to fight off something? She's been awful congested lately. Or does she just need sleep? Or or or ...

Back to thinking of chocolate (just as yummy - if not more - than sweet raw honey!):

"Pleasant words are as a honeycomb, sweet to the soul, and health to the bones." - Proverbs 16:24

Saturday, July 9, 2011

Lilly's crazy sock monkey

Lilly's great-aunt brought her a patriotic sock monkey for her birthday. It really makes us laugh. My aunt had it special made by the woman that has this Etsy site:

It even has removable bows on the top of it's head that are on clips so that Lilly can wear them when she gets more hair.

Lilly did a new trick on her birthday (this past Monday) while we were at the hospital visiting her Pop. She opened her forefinger on her right hand for the first time ever! She opened it to about a 90 degree angle and has been opening it off and on ever since. We were all so excited to see this!

Here is a little birthday display for Lilly. Next to the sock monkey is a little 4th of July figurine. I'm not a knick knack collector anymore, but I did like this and thought it would be neat to get one for each of Lilly's birthdays. I wrote the date on the back of the girl's stand. I like decorating the little silver tree for each of my kids birthdays, and for holidays. It has flag stickers, some birthday related stickers on ribbons, some scriptures, and a few patriotic ornaments on it. (Combo Lilly's b'day and Independence Day tree.) A woman from our church made the paper firecracker. They were party favors at Lilly's birthday party and are filled with red and white peppermints.

This morning Lilly is going to have a special photoshoot with the photographer that came to the house to take pictures 4 days after she was born, through a program called Now I Lay Me Down To Sleep. (They take free pictures of babies that are not expected to live long.) Well here Lilly is a year later (praise God!) and so we thought it was appropriate to get some more pictures made. Hopefully she will cooperate by flashing some of her big smiles. If you live in our area, I recommend this photographer:

"This is the day the LORD has made; let us rejoice and be glad in it." - Psalm 118:24

Thursday, July 7, 2011

Party party party!!

Lilly, our Little Firecracker, began celebrating her 1st birthday a few days before July 4 - The Big Day.

Last Friday she donned her "official 4th of July party outfit" for her first party. (She got the outfit from her friend Giuliana - a little girl with Trisomy 18 that turned 11 months on July 4.) That evening she celebrated with some local family members, and her great aunt and my cousin who drove up from Florida, and with my brother, his wife, and son that live out-of-state. (This was her first time meeting cousin J.!)

That party consisted of a meal and of trying to line up all 7 cousins on a couch to take pictures. Not an easy task considering the ages: three babies under 1, two 2-year-olds, a 3-year-old, and a 10-year-old. It was utter chaos but pretty hilarious. One of the babies is an only child and he must have thought it was pure madness.

After that it was cake time. I would love to have been able to say I made Lilly a special, beautifully decorated cake but alas, I just didn't have the time or energy. I consoled myself that it didn't really matter since she wouldn't exactly be eating any of it. (Though I did give her a tiny dab of frosting on her tongue. She recoiled in disgust!) Ha!

Saturday evening, Lilly put back on her party attire for her next party. This one was being thrown by our church pastor and his family. I never did have a baby shower for Lilly as I was afraid of what might happen. But this 1st birthday seemed to be a proper time to really celebrate her life with church friends. Some of my family attended that party too. We had a potluck meal, a pinata (Lilly dozed through kids wacking on it until it broke), and a GIANT cake. Pictures of this party are below.

Lilly sitting by the cake:

This cake served 96 people! It surely weighed more than Lilly does!

Decorations were orgami paper lilies made by a sweet girl from church:

Lilly preferring to chew on her thumb rather than eat any cake:

Sunday night we celebrated Lilly's birthday eve by driving a few blocks over to watch the town's fireworks. While waiting for them to start, I recounted to Lilly her amazing birth story. She listened politely. Then when the fireworks began, I stayed in the car with Lilly because I thought they might bother her. But then, unable to resist my 2-year-olds squeals of delight, we got out and joined the family. The noise didn't bother Lilly at all (a positive to having some hearing loss I guess) and she seemed fascinated by the all the lights in the fireworks.

On Lilly's actual birthday we went to visit Pop, my father-in-law, in the hospital. He and Mom, my mother-in-law, were happy to celebrate with Lilly. Pop has never been able to speak much since his stroke in February, and sadly now has kidney poisoning and isn't expected to live more than another week or two. (Please pray for comfort for the family, especially his wife.) But when he saw Lilly he gave her a big smile. I reminded him that he came to see Lilly on the day she was born and he nodded attentively. He enjoyed our other children too. Our son is a "third" and named after Pop.

I have a nice little stash of red, white, and blue clothes for Lilly now, and she is continuing to celebrate her life by wearing a different one of those outfits each day this week. Hey - we'll probably do it all month long! I really dislike statistics, but I do like one I heard this spring. That of the children with Trisomy 18 that make it to one year, 60% make it to 5 years. What a more encouraging statistic than only 10% making it to one year. We are so grateful to God for allowing Lilly to live!

"It is good to give thanks to the Lord, to sing praises to your name, O Most High;" - Psalm 92:1

So many of you have been so generous with gifts and cards for Lilly. Thank you! Lilly plans to get working on her thank you notes asap!

Monday, July 4, 2011

Happy 1st Birthday, Little Firecracker! And Happy 4th of July!

Weight check = 12 lbs. !!!!!!!!

Happy happy birthday Lilly! Our Little Firecracker is 1 year old today! In the Trisomy 18 world this is huge. Only 10 % of these babies make it to their first birthday. I've been thanking God for Lilly surviving since I first opened my eyes and looked at Lilly this morning.

If you'd like to see pictures of Lilly on this day last year, see my post about my labor and delivery:

Lilly has been celebrating all weekend. (pictures and stories to come.) Today we are going to celebrate her life with her grandparents in a hospital. (Her Pop that had the stroke this past winter.) Praise the Lord Lilly will only be a visitor in the hospital. (And an "undercover" one at that! She goes in and out completely covered up in my wrap.)

Lilly's headband, diaper cover, and socks are all from Etsy. Her beautiful bracelet is red, white, and blue with an "L" charm. It is from

"I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well." - Psalm 139:14

Sunday, July 3, 2011

Visit to the eye doctor

This past Friday Lilly had her first visit at the eye doctor. A genetic pediatrician she saw months ago thought she might have a cataract. Thankfully Lilly does not have cataracts. In fact, her eyes are very healthy. (She made the eye doctor work really hard to check her eyes. The doctor said she was sweating by the end of Lilly's appointment!)

Lilly's eyes still "bounce" though not as much as they used too. Both eyes don't always work together. She does not track things well at all. In fact, the eye doctor could only get her to track an object that had a light on it. She didn't focus on any of the other brightly colored objects the doctor held up for her. The doctor thinks this is probably just a developmental delay.

It is not always easy for Lilly to make eye contact with us. But when she does, she is able to hold contact for up to about 2 feet distance. That is improvement though, so Lord willing she'll just keep getting better in this.

She'll go back for another eye check in 6 months.

I asked if Lilly's eye color was still changing and the doctor said it was done. Lilly's eyes have turned from a dark blue to an almost olive shade of green.

My husband talked to the cardiologist nurse in Florida on Friday and she said that hopefully, we will have an answer about whether or not they will agree to do Lilly's heart surgery (VSD repair) by the end of this week. The cardiologist team need to discuss her case and then she'll be discussed at their meeting with the surgeon.

"No eye has seen, no ear has heard, no mind has conceived what God has prepared for those who love him . . ." - 1 Corinthians 2:9

Lilly has already had two parties to celebrate her first birthday, which is tomorrow, July 4. I'll blog on these asap!