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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

Wednesday, June 29, 2011

"Renewed by God"


During homeschool lately, I have been assigning my daughter T. some digital picture projects. While loading her pictures to the computer, I found that besides her school assignment, she had taken these photos of Lilly.

I asked her about her sign she made on Lilly. It says "Renewed by God." She said that God renewed Lilly like a library book and that she keeps getting better. I thought that sounded pretty good!



We got an itemized bill for Lilly's last hospitalization. For 11 days the total came to $69,944.79. Whew! Thank God for Samaritan Ministries. (Our health insurance alternative.) The entire bill will be paid. The itemized bill is 11 pages long. I have to say it's rather interesting reading everything. (And makes me want to tell them where they can get better prices on some of this stuff!)

Readers of this blog have left such kind comments about us as individuals and parents. I have to say though - you're way too generous! We are far from perfect. We're trying the best we can. But I'm not on the inside what I appear on the outside! My thoughts are often all jumbled, sometimes I feel so panicky about Lilly, I get frustrated with things - especially her feeding pump and pole that's always attached to her (dumb I know since it keeps her alive), at times I wish we didn't have to be so careful with Lilly (but then I feel guilty for thinking that since God has been so gracious to let her live this long), and I've felt like I've needed a really good cry since May. (Why won't the tears come??) One day at a time though ...

May we all be "renewed by God!"

"Do not conform any longer to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God's will is -- his good, pleasing and perfect will." - Romans 12:2.

Tuesday, June 28, 2011

Hello Lilly



Thank you cousin M. for Lilly's "Hello Kitty" shirt! I wish it came in my size! :)

There are a couple people that seem to often feel that we are taking risks with Lilly's health. Whether it be talking her outside for an activity (pollen risk) or to the lake (bacteria risk) or to a small social gathering (germ risk), to church (big germ risk), out in the snow (cold risk), etc.

My response is always that we would never do anything to purposely endanger Lilly. This post is not to put those people down - I know they love Lilly very much and I am grateful. But I do have a couple thoughts I wanted to share.

(2nd picture - Lilly loves looking at herself in her mirror and caring on conversations with her reflection.)

First, we do take a lot of precautions with Lilly. We know all too well how fragile her immune system is. We do want to protect Lilly and not put her through unnecessary things. We don't take what we see as big risks. We've never taken her into Walmart (a/k/a The Germ Factory) and might not ever! We don't make travel plans without knowing where the closest PICU would be. We all wash our hands frequently and try to stay healthy so we don't get Lilly sick. We constantly petition the Lord to protect Lilly's health, almost always praying specifically about it right before going somewhere.

But we don't see staying locked in our home 24/7 and never letting anyone in as an alternative. We don't want Lilly to be "the girl in the bubble." (By the way - is "the boy in the bubble" still alive?) We want Lilly to have a good quality of life. And we want our whole family to be together, making memories, with Lilly included.

Lilly LOVES going places. She enjoys church each week and usually is awake the whole service looking around. (We have decided it is important for our whole family to attend church together. However everyone there knows not to ask to hold Lilly and people rarely even reach to touch her.) Twice I've taken Lilly into a health food store by her cardiologist and she was mesmerized. (I carried her in there in my wrap with only her little face peeking out.) We get together with friends when we can. (So far people have been very cautious and let us know if they're not feeling well and we'll cancel until they're better.) We took Lilly to the airport once and I did completely cover her up while inside. But outside I uncovered her head and she enjoyed the people walks. My poor father-in-law (that had a stroke in February) has been in hospitals and a rehab facility (and is still not doing well - please say a prayer for him) and we go visit him. (Again I put Lilly inside my wrap and cover her up while in the hallways at these places.) Whenever we get home from being out in public, or outside more than a few minutes, I give her a bath and fresh clothes.

These are just some examples. But I hope it shows that we are careful with Lilly, we do think about what we're doing, and try to take preventive measures.

We have two other children. A 10-year-old and a 2.5-year-old. Even the youngest seems to understand that with Lilly there are just things we will not do. Sometimes it can be disappointing, but they are OK with it. However, imagine if they never got to enjoy doing anything out of the house without both parents and their baby sister along. They would most likely grow to resent Lilly. But by finding things that we feel are OK for us all to do together, we are creating good memories for us all, and those memories will always include our Lilly. That is so important!

I'm sleepy and I'm not sure I'm expressing this very well. But I did think it was important to share. Those of us that have someone a little extra "special" in our family, still need to have our family feel like a "normal" family whenever possible. Perhaps that doesn't make sense to some, but I think other families with special needs children understand.

"How precious is Your loving kindness, O God! Therefore the children of men put their trust under the shadow of Your wings." - Psalm 36:7

Sunday, June 26, 2011

Sweet gifts from Hannah Grace's family



Weight check = 11 lbs. 11 oz.

Last month I posted a picture of and a link to the story of a little angel girl named Hannah Grace. Hannah had Trisomy 18 but is now perfect and in heaven. Her mother sweetly sent two of her outfits for Lilly. Hannah's sisters sent gifts too - one made a couple flowers for Lilly's headbands, and another made a blanket for Lilly. Lilly and I are so very honored to have received these things.


Here is a direct link to read Hannah's story if you didn't see it last month when I posted it: http://kwantfamilycorner.blogspot.com/


In today's pictures, Lilly is wearing an orange dress that her big sister T. bought her. She is wearing an orange flower from one of Hannah's sisters, and is lying on a blanket made by another of Hannah's sisters.

After trying a lot of things, I have finally found something that seems to be clearing up Lilly's eczema. It is a product called Borage Dry Skin Therapy by ShiKai. It is for dry skin, eczema, and cradle cap. Their "secret" is from Borage - an herb that is rich in Gamma-Linolenic Acid (an omega-6 fatty acid). I had never heard of that before, but it is wonderful!

Friday, June 24, 2011

Suck that thumb, Lilly!


Several times this week Lilly has opened up her right thumb and managed to get it into her mouth. This is so very exciting! Lilly has never before unclenched her forefinger and thumb on her own. Plus, if she does begin sucking her thumb then that would be so good for feeding for her to have her suck instinct back.

We are in the process of getting Lilly set up with an occupational therapist to come to the house to work with her. Physical therapy is going very well. So we hope that occupational therapy will really benefit Lilly too. That therapist would be working with Lilly's hands and on fine motor skills.


Lilly is getting pretty good at wacking the animals hanging over her bouncy seat. She did that a lot this afternoon. She also was able to grab the loop under the frog hanging in the middle a couple times, and pull it hard enough for the music to play. Whenever she did, even my 2 year old would stop and clap and cheer for her. She seemed so happy doing that.

"When I consider Your heavens, the work of Your fingers, The moon and the stars, which You have ordained, What is man that You are mindful of him, And the son of man that You visit him? For You have made him a little lower than the angels, And You have crowned him with glory and honor." - Psalm 8:3-5

Thursday, June 23, 2011

Lilly's first swim

Today Lilly had her first swimming adventure at a lake near us. It is my older daughter's 10th birthday and she wanted to swim.

First she dressed in her new swimsuit. No bikinis for Lilly. I love these full coverage suits. Her chubbniness is modestly covered ;) and I hardly have to put any sunscreen on her.

Lilly's eyes are very sensitive to the light. (Common with Trisomy 18 babies.) So I put her sunglasses on her and then her sunhat.


At the lake I put her into my Gypsy Mama water wrap. She seemed to enjoy snuggling close as we went into the water. She actually slept the first hour or so we were there. But then she woke up and started talking about things. She seemed to really enjoy being in the water.

Being in the water feels wonderful and bodies of water are incredibly peaceful to look at.


"Then the angel showed me the river of the water of life, as clear as crystal, flowing from the throne of God and of the Lamb." - Revelation 22:1

Monday, June 20, 2011

Negative comment: We have "condemned Lilly to life"

A few days ago, I received the following comment on this blog (under my post "The Chub Factor" dated 4/28/11):

"God doesnt give a crap about anything for the simple fact that he doesnt exist. But sheeple feel more comfy believing in imaginary friends. The proof that there is no moron up there in the sky is ur poor daughter herself. U condemned her to life, shame on u!"

It was signed "anonymous."

While I won’t primarily dwell on the existence of God question, there are a few irrational (logically inconsistent) ideas expressed by Anonymous that bear addressing. (1) Only a being capable of being in all times and places simultaneously (God) is capable of stating unequivocally that there is no God. Anonymous can be a skeptic or an unbeliever but can not rationally know, let alone prove, that there is no God. (2) From where does Anonymous receive moral authority to pronounce shame on others? To pronounce judgment on another requires some standard of "good" that the atheist needs to account for. (3) Finally, it is a logical fallacy---that I’m sure that Anonymous does not consistently apply in their life---to suggest that whatever can not be seen with the eyes must be imaginary.

The main part of the negative comment that I feel needs addressing most at this point is the last sentence: "U condemned her to life, shame on u!" When I initially read this, I was holding Lilly in my lap and she was smiling at me and talking to me and was just so happy! Was she feeling "condemned?" Absolutely not! Anyone, I think including Anonymous, would see from just a few minutes in Lilly’s presence that she is glad to be alive, to say nothing of the joy and delight she brings to everyone in her life.

But Anonymous does not believe Lilly should have been allowed to live. That made me think of an article my brother P. shared with me by Chuck Colson, entitled "The 65,000 Question." (See
http://www.christianitytoday.com/ct/2005/october/28.48.html ) Colson, grandfather to an autistic boy named Max, discusses Peter Singer, Princeton ethicist and atheist. Colson shares some statements by Singer:

"‘All I say about severely disabled babies is that when life is so miserable that it's not worth living, then it is permissible to give it a lethal injection.’ He asks rhetorically, ‘Why limit the killing to the womb?’ As if to answer his own question, he says, ‘Infanticide … should not be ruled out any more than abortion.’"

Did Singer limit murder to "severely disabled babies?" What about someone that is in a car wreck and becomes disabled? Should we murder them? What about someone that is really sick and has been in the hospital "too long." Are they worthy of lethal injection?

Colson’s article summarizes a debate between Singer and Disabilities-rights activist Harriet McBryde Johnson. (Reading this made a lasting impact on me.) Johnson, an attorney with a muscle wasting disease, needs help doing most physical things. Johnson argued that "the presence or absence of a disability does not define the quality of life." Johnson and Singer came away from their debate with some new respect for each other. But Johnson did say "[Singer’s] weakness is his unexamined assumption that disabled people are inherently ‘worse off.’"

Can we carry the eugenic argument to its natural conclusion? Since pretty much every person on earth suffers at some point in some way, physically, emotionally, or mentally, should any of us be permitted to live? Or are we all "condemned to life"?

Lilly is a fighter has shown her will to live five distinct times now. Should we have said "sorry - we don’t care you want to live. You’re not worth it." and then murdered her?

Did Anonymous accuse us of allowing Lilly to live because they really feel so sorry for Lilly for the times she is sick? Is Anonymous a person with a heart overflowing with compassion? Or does Anonymous just really think Lilly is a dead weight because she is mentally and physically delayed? Has Anonymous ever thought that many of us actually find taking care of others to be extremely fulfilling and not a burden in the least?

I confess I don’t know how Anonymous would answer these questions, and I can not judge this person’s heart. But I do know that the problem that leads to skewed thinking such as this, for Singer, Anonymous, and all of us, lies in our hearts. Professing to be wise, we become fools and we worship the creature rather than the creator (Romans 1:22, 25).

"O wretched man that I am! Who will deliver me from this body of death?" - Romans 7:24. All of us, Lilly, Anonymous, you, me are condemned to a body of death by our sin. But there is an answer for all of us. There is a redeemer. "Thanks be to God---through Jesus Christ our Lord! . . . . There is no condemnation for those who are in Christ Jesus, . . ." - Romans 7:25, 8:1

My husband and I pray that all who read this blog, come to know Jesus Christ for who He is: "Jesus said . . . ‘I am the resurrection and the life. He who believes in Me, though he may die, he shall live.’"

Thank you God for Lilly’s life. In Jesus it is both abundant and eternal, and certainly worth the living.

While I am typing this post, Lilly is right next to me. She is smiling and waving her arms and chatting away. Most of her days are like this. I daresay this child knows a joy more pure than any of the rest of us will probably ever be blessed to know. To God be the glory!

Sunday, June 19, 2011

After church baths


Today Lilly wore another old baby dress of mine to church. My older daughter wore this same dress on her very first trip to church almost 10 years ago.

Most people give their kids a bath before going to church, usually Saturday night. Lilly gets her bath Sunday late afternoon after we get home. I figure that's the best for her so I can get her clean from any germ exposure. She LOVES her baths. :)





Friday, June 17, 2011

Preparation ... sleep!


Weight check = 11 lbs. 7.5 oz.

Today’s pictures are of Lilly right in the morning after I woke her. Check out her crazy hair!

I was thinking the other night of how different it is getting Lilly ready for bed as opposed to my other children. The older two were simple: change diaper, put on pajamas, nurse, put in crib, and bless good night.


Putting Lilly to bed however has a few more steps. Typically they are: give night dose of Enalapril, change diaper, put on diaper cover, put on pajamas, fill milk bag with breastmilk (for continuous feed through night), carry Lilly and her milk pump on pole upstairs, plug in pump to recharge overnight, squirt saline drops into Lilly's nose, suction nose, turn on oxygen condenser and check settings, put oxygen cannula holder special tapes on Lilly’s cheeks, put cannula on and close holders, safety pin arm sleeve down of pjs so she doesn’t rip cannula off, snuggle time!-yay!, lay her on her side in co-sleeper, adjust oxygen and g-tube tubes so she’s not laying on them, put a little pillow under her top leg, cover her with her blanket, and bless her good night!

And that’s what I’d better do right now. Lilly is in my lap smiling, having the hiccups, and starting to yawn like crazy. :)

"I lay down and slept; I woke again, for the Lord sustained me." - Psalm 3:4-5

Wednesday, June 15, 2011

Just a swinging!



Today I unpacked our baby swing for Lilly. The pictures and video here are from her first time in the swing. She didn't seem to know what to think! She gave me serious looks and talked hard. But this evening I put her in it again and she liked it.



When Lilly is really upset or tired, she likes to be jiggled. So I hope she really enjoys the motion of the swing. Because she's still so limited in what she can do physically, I find it hard to offer her a variety of activities to do during the day. Not that she seems bored. She is usually such a content baby.


"How do you like to go up in a swing, Up in the air so blue? Oh, I do think it the pleasantest thing Ever a child can do! " - from "The Swing" by Robert Lewis Stevenson



video

Tuesday, June 14, 2011

Compatible with joy


In today's pictures you can see matching name bracelets that my older daughter made for herself and Lilly.

I recently found a website about Aaron, a little boy with Trisomy 18 that just turned one. Yay! I love the name of his blog: "Compatible with Joy." A common phrase in the medical field describing babies with Trisomy 18 is that they are "incompatible with life." So this boy's blog title is just wonderful how it corrects that horrid phrase. If you'd like to read about Aaron, go to:
http://compatiblewithjoy-trisomy18.blogspot.com/

"Rejoice in the Lord always; again I will say, Rejoice." - Philippians 4:4

Saturday, June 11, 2011

Baby eczema - any recommendations?

Here's a little video of Lilly blowing spit bubbles (or raspberries as some people call it). She loves making loud slobbery noises with her mouth now.



video

We have been amazed at how happy Lilly has been feeling lately. She is getting so good at making eye contact and talking to us. And she is smiling almost anytime anyone looks her in the eye.

Lilly seems to have eczema on her face. I am hoping it's only "baby eczema." My son had that and it had cleared up by the time he was about 15 months old. I tried using the herbal salve on Lilly that worked so great for my son, but she has not had the same result. We tried a number of other things but nothing seems to completely clear it for long. Does anyone have any recommendations? Thank you!

"Seek the LORD and his strength, seek his face continually." - 1 Chronicles 16:11

Thursday, June 9, 2011

Our heart surgery decision



Weight check = 11 lbs. 1 oz. !!!!!!!!!!


Yesterday Lilly went to the cardiologist for a heart checkup and echo. Dr. R said that Lilly's breathing and respiratory were the best he has ever seen for Lilly. Her heart function has returned to normal (after the virus last month) and her profusion good.

The echo also showed her left ventricle is BETTER! And one wall of her heart measured 1 mm less than last month. Because of this, Dr. R questioned whether Lilly has true hypertrophy or not.


It sounds like God is answering that prayer request, either through divine intervention, or perhaps through the new RBC Life product Lilly is on called Stem-Kine. I started her on the Stem-Kine at the end of May. (See my post "Super Supplements" dated May 28.) One of the benefits of Stem-Kine is supposed to be heart healing after about two weeks of taking the product. Wow!


We also had a long discussion with Dr. R about the pros and cons of the VSD repair surgery and of just staying with the pulmonary artery band for a longer time.


We have concluded that we want to again pursue the open heart surgery for Lilly at this time. Dr. R said that Lilly is "clinically fantastic" right now. In fact, he is going to contact Wolfson Children's Hospital in Florida again (where Lilly got her pulmonary artery band) and ask them to reconsider their decision not to do the heart repair. If they still refuse, then we will take Lilly to the surgeon in Charleston, SC (Medical University of South Carolina) that said he would be open to operating on her.


Due to Lilly's weight gain, Dr. R increased Lilly's Lasix to 0.5 mg (once a day) and the Enalapril to 0.5 mg (twice a day).


Before Lilly's cardiologist appointment, I had to go to the dentist. (I've got pesky problem with my right jaw popping apart.) The dental hygienist asked if I was going on vacation this summer. I said we'd like to but I don't feel too comfortable being away from hospitals with PICUs because we have a baby that has frequently been hospitalized. She replied that she knew just how I felt. She and her husband have a cat that was diagnosed with cancer in December and they don't want to leave it. It was really hard not to laugh. (I know how people can love a pet like a child so I don't mean to criticize.) But just to think of Lilly's roller coaster life and how I live on pins and needles at times, and how that compares to the life of a cat!

Lilly accomplished a milestone today. (Second two pictures.) She was having tummy time with a little pillow under her upper body. She was laying as usual with her head turned to the right. Then she suddenly lifted her head up and turned it to the middle and dropped it back down! She did this for several minutes turning it back and forth. It was incredibly exciting to see. She was exhausted after that and took an hour's nap. :)

"Seek the Lord and his strength; seek his presence continually!" - Psalm 105:4

Tuesday, June 7, 2011

About those doctor visits


(For June 3) weight check = 10 lbs. 10 oz.
height = 22.87"

Today's pictures are of Lilly riding home from her doctor appointments last Friday.

First Lilly saw the surgeon's nurse to have her g-tube checked. Everything looked good though she had some granulation tissue around it. (This is raised, red tissue around the hole where the tube goes into her stomach.) They said this happens because the stomach tries to heal itself shut. It doesn't happen to everyone with a g-tube though. They gave us some things to dry up the tissue. (I've been applying it once a day and the granulation is just about gone.) Apparently some people will get the granulation frequently, while others only once, if at all. We're to go back in September for them to put a new g-tube in. (We'll eventually learn how to put new ones in ourselves.)

Next Lilly saw her pulmonologist. She said Lilly is doing just great. She was so pleased with how Lilly looked and acted and almost couldn't believe it. She shared that when we saw her a couple months ago she was very, very concerned about Lilly and though we were "in for it." We're to see her again in September.

Finally we saw a pediatric dietitian. She said not to adjust Lilly's feeds right now (keep it continuous) until she had gained more of the weight she lost at her last hospitalization back. Our goal is for Lilly to gain a half ounce a day. (Though to take weight gain in consideration over a 7 day period.) She said Lilly's height and weight is in excellent proportion.

After those three appointments, we came home and Lilly had an hour session with her physical therapist. Lilly's physical movements are rapidly improving with each therapy session she has! And then her "case worker" came to go over some new paperwork with us.

Then after those five appointments we went to Lilly's big sister's Keepers at Home annual awards banquet. It was a very full day.

Tomorrow Lilly sees her cardiologist. We hope to come to a better conclusion of what to do about pursuing heart surgery (VSD closure) now or to wait awhile.

"The Lord is good to all; he has compassion on all he has made. - Psalm 145:9

Sunday, June 5, 2011

Happy Sunday!

Sneaky Lilly wishes all her blog readers a blessed week!

Today she wore a dress that I wore as a baby. It is a dress from Lilly's great-great-grandma, and namesake, Lillian. Pretty baby in white!











Saturday, June 4, 2011

Happy 11 month birthday, Lilly!

Lilly is 11 months old today! Happy 10 month birthday to Lilly's friend Giuliana! You go girls! :) Keep beating the odds.

Lilly started out the day with some congestion and spit ups but after a long nap seemed fine and was happy and smiling a lot this afternoon and evening.

Yesterday Lilly had FIVE appointments and today was busy. I'll blog about the appointments asap.

I heard today from the mama of Jordan, a little angel girl that had Trisomy 18. Jordan only lived 3 days. Today would have been her 2nd birthday. Her family was celebrating and remembering her with angel food cake. I thought that was such a sweet tradition. Jordan is now free of Trisomy 18 and is perfect.


"And God will wipe away every tear from their eyes; there shall be no more death, nor sorrow, nor crying. There shall be no more pain, for the former things have passed away.” - Revelation 21:4

Thursday, June 2, 2011

Can you hear me now?



I finally talked to the audiologist who tested Lilly's hearing after her g-tube surgery in early May. She confirmed what the ENT told me briefly - that Lilly does not have great hearing. (More than half of the children with Trisomy 18 do not have perfect hearing.)

Lilly's right ear responded better than the left. Hearing in the left ear is "moderately severe." The audiologist suggested that when we talk to Lilly we talk towards her right ear.

Lilly's ear canals are very very small and the doctors could not even see her ear drums. They did a special test where they by-passed the ear canal and middle ear and went to the cochlea. That response was actually much better. That means that the sound gets lost along the way in Lilly's ear.

We're to meet with the audiologist and ENT at some point to discuss things further and see what Lilly's options are.


Good news though is that we know Lilly does hear us. She turns her head towards our voice when we come in a room. And since she has noisy siblings - one of which is often banging on the piano - it is probably not that terrible that she doesn't hear perfectly. (Not that I want her hearing to be compromised, but I'm sure you know what I mean!)

"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

Wednesday, June 1, 2011

Lilly's musical accomplishment

Weight check = 10 lbs. 14 oz.

Last night Lilly was sitting in her bouncy seat on our table as we ate dinner. She was flinging her left arm around and ended up wacking the turtle that was hanging down in front of her. Then she got her fingers hooked into the frog. She pulled it and it played music.

We all thought that was a pretty neat chance happening. But then she did it again! And this time we saw her cock her eyes towards the frog as she reached towards it and clumsily hooked her fingers! She did this several times and we all clapped and cheered each time. It was amazingly exciting knowing that this was a huge accomplishment for Lilly!


After she tired herself out, she got to celebrate by drinking homemade chicken broth through the soft dropper she likes. (Thanks C for the tip!) Lilly seemed to really like it. I made it from organic chicken bones and feet. (Yuck! That was my first dealing with chicken feet!)


I've been hooking Lilly up to the pulse ox while she naps. She's been doing great lately. Not setting it off at all. I look forward to telling her pulmonologist Friday. Maybe we can cut out the wee bit of oxygen at night soon. By the way, I have finally found something that keeps the cannula stuck to her face and is gentle on her skin (thanks cousin M). It is this product by Neotech: http://neotechproducts.com/mini-ezhold-cannula-tube-holder-p-72.html (Tip: You can get free samples from the company in different sizes to try.) The cannula still pops out of Lilly's tiny nose though if she rubs her head on the bed enough. But overall, we're having more success with it staying in all night.

It's so neat knowing that God knew that Lilly would first pull that frog purposely yesterday before He even created her:


"My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth. Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be." - Psalm 15-16