More junk for Lilly to get out

I'm not sure if we're in a new phase of Lilly's illness or if she now has a cold. (Her brother seems to have a light cold today.) Off and on all day her nose has been running with thick greenish yellowish stuff. I use the NoseFrieda to suction her nose and the stuff I'm getting out has actually turned my stomach a few times when I clean out the nose sucker after a suction.

Nice image, huh?

But we do what we need to do to try and help our kids. Even when it makes us queasy!

Lilly is getting irritated with having her nose messed with, but other than that seems OK today. For the past two mornings she has spit up shortly after having her antibiotic - and I can smell the medicine in the spitup. I hope she is keeping enough inside to help her properly. (She gets a dose at night too.) I'm trying to give her the medicine with yogurt, to help her stomach. It's been working for the most part.

I took the pictures I posted today this past Saturday. It was my second round of having all three kids in front of the Christmas tree to try and get a good picture for our annual Christmas card. NOT EASY TO DO! I'm glad I'm not a professional photographer. Group pictures are hard. Seems like someone either blinks, makes a bad face, turns out a little blurry, or something.

Yesterday my husband got an e-mail for us from A.W., a friend of his mother's. She shared some kind thoughts and ended with a poem entitled "Hope" by Emily Dickinson. I thought that was neat since I had mentioned hope in yesterday's post. I admit I'm not a huge fan of poetry (though I used to crank it out as a kid) but I liked the poem enough that I have posted it below.


Hope - by Emily Dickinson
Hope is the thing with feathers
That perches in the soul,
And sings the tune--without the words
And never stops at all,

And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.

I've heard it in the chillest land,
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me

Get the junk out Lilly!

Weight check = 13 lbs. 1 oz.

Lilly is still doing well overall as her body fights the lung infection she has. She's still on an antibiotic and will be until Saturday. We're doing three nebulizer treatments a day. And lots and lots of hard back patting. (I can actually feel congestion breaking up in her as I do this to her.)

I had my 10 year old daughter "nebulize Lilly" yesterday for the first time. What a blessing to have her help! Though if you look at today's second picture you'll see that Lilly looks like she could just about nebulize herself.

Lilly has had A LOT of mucus coming out the past two days. Big traumatic spit ups - food mixed with lots of thick junk. But we're so glad it's coming out. Lord willing that means she's getting better! This morning's spit up was so messy she had to have a bath. I don't think she minded the bath part. She loves her bath!

Yesterday the genetic counselor that saw us when I was pregnant with Lilly contacted me to see if it was OK with me if she used some pictures and excerpts from this blog in an upcoming presentation she is giving to various medical and laboratory professionals in genetics. I am so excited for Lilly to be used as a positive example! (This kind woman made the red, white, and blue quilt that is behind Lilly in my blog header. You can read that story here and see a picture here.)

Here is a wonderful story about a woman with Trisomy 18 that lived to be 28 years old!
http://www.therecord.com/living/article/637360--lifetimes-mary-pickles-charmed-everyone?mid=550
Every time I see a story like this I think "why didn't I find something like this when I was pregnant with Lilly?!" Hope is a wonderful thing.

"Rejoice in hope, be patient in tribulation, be constant in prayer." - Romans 12:12

To "Anonymous" that asked for prayers for herself and her mother in recent comments - we are praying for your requests. ANYONE that would like us to pray for them - please follow Anonymous' example and leave your prayer requests in comments. It would be an honor for our family to pray for you.

Hangin' In There

Lilly slept soundly for about 13 hours last night. Her pulse ox alarm woke us up a number of times. She dipped into the 80s about every 2 hours. But the numbers jumped back to the low 90s quickly. Not great but not horrible. (These numbers represent the saturation percentage of oxygen in the blood.)

When she finally woke up, she was smiling and happy. She ate, had a breathing treatment with the nebulizer, then lots of back patting.

As she is napping this afternoon, I have been so encouraged that her numbers on the pulse ox are ranging from 97 and up! YIPEE!! Definite answer to prayer. Lilly is not out of danger yet, but this is improvement.

The pulse ox is one of our most important pieces of equipment for Lilly. It's one thing that we will always want to have for her. So we decided that there was no point in continuing to rent one, and just bought one. (Thanks cousin M. for helping finding one!) (2nd picture - You can see it in the right corner of the changing table that Lilly is napping on.) So far it's working well and is much smaller than the huge one we're renting.

My son - the little mechanic - loves all of Lilly's medical equipment. He's fascinated how everything works. Today he wanted me to make
a pulse ox for his Doggie. He stayed busy with it all morning, and would talk about Doggie's numbers not being good, or that he liked the quiet alarm on Doggie's pulse ox, or the sensor needed changing. It was pretty funny.

Though it also reminds me how different life is for siblings of Trisomy 18 children. (Or any special needs child.) On Monday as my son and I were walking through the parking lot to the emergency room with Lilly he exclaimed "This is a hospital where Lilly almost died at!" I confirmed "Yes, one of several."

This morning I read about the apostle Paul pleading with God to remove a "thorn" from his side. (The Bible doesn't specifically state what that thorn was.) It did make me think of Lilly as I thought about God's reply to Paul:

"'My grace is sufficient for you, for my power is made perfect in weakness.'" - 2 Corinthians 12:9

Sometimes all this stuff with Lilly seems so hard and overwhelming. But God's grace IS sufficient for Lilly. And us.

Urgent prayers needed! Lilly is sick. Again.

Today's picture - Lilly waiting for a chest x-ray. Turned out she had good reason to look a bit annoyed! They had to re-do it a second time because their computers wouldn't send the images to the pulmonogist. That made Lilly MAD!

After listening to Lilly's chest and lungs this afternoon, Dr. H, Lilly's pulmonologist, ordered an x-ray. I was sad to see the results. There is a large white mass behind her heart. Dr. H said it probably started out viral, but has consolidated. Perhaps bacterial.

She said to start Lilly on the antibiotic that we had a prescription for, do several nebulizer treatments a day, and lots of back patting to help loosen the gunk. She was pretty amazed that Lilly didn't have a fever and was so happy, smiling and chatting.

Dr. H said she felt "very protective of her children" and asked if I would like her to have Lilly admitted to the hospital right away. She is concerned about Lilly's record. How things come on fast all at once.

I thought about it but declined. I promised we would continue to monitor with the pulse ox and if her levels dropped or her breathing got bad again, then we would take her right in.

It's a hard decision. Very hard. We've certainly had a number of scares with Lilly. But right now, in spite of being so sick, she is happy. (She's in my lap right now grinning at me!) And she is sleeping normally. If she were in the hospital, she would be very agitated at staying in bed with all the monitors on and she would have her sleep frequently interrupted. (Sleep is important for healing!)

So - we'd rather her have a better quality of life right now at home. And we're praying like crazy that this pnemonia - or whatever it is! - will clear up quickly and Lilly can just work through it safely staying home.

Please pray that with us. And THANK YOU! We are so grateful!

“For with God nothing will be impossible.” -Luke 1:37

“'For I will restore health to you and heal you of your wounds,' says the Lord." - Jeremiah 30:17

Hospital recap in pictures

Here are pictures from Lilly's last hospital stay. (May 7 - 18)

In the emergency room:

Extubated on Mother's Day after almost dying:

Lilly was hooked up to 7 pumps delivering medication and nourishment:

Oxygen and monitors on the other side of Lilly's bed:

The nurses put ribbons in Lilly's hair:

Raise your fist and yell "SURVIVOR!!!!"

Extubated and smiles for mamma and daddy!

Sleeping her way to recovery:

Dressed and ready to go home!

The end!

Looking at these pictures makes me want to cry again with relief that God allowed Lilly to survive. Again. We just love her so much and can't imagine not having her with us.

"Love never gives up, never loses faith, is always hopeful, and endures through every circumstance." - I Cor. 13:7

Going home!

Lilly and I are packed - and she's wearing regular clothes again for the first time in 11 days - and we're waiting for our ride home! We are so nervously happy! :)

The doctor feels that Lilly's alarms going off this morning, when she was in deep sleep, is simply normal for her. She wants her to go home and enjoy the best quality of life that she can - surrounded by her family that loves her.

Amen!! Thank you God for once again being faithful and getting us through this stressful time!

All is calm now

About 30 minutes after I posted our last prayer request, the alarms stopped and Lilly hasn't sent them off since. Making fun of that old ad - "how do you spell relief?" - the real answer is "a quiet pulse ox!" Even though I KNOW God answers prayers, I am almost always surprised that He does. And quickly!

The doctors were to have discussed what to do about Lilly this morning at rounds. I haven't heard anything yet.

I had a thought about dealing with death this morning. Something I've been thinking more and more about the last couple of weeks. I know that many of us (myself included) feel really awkward around people that just had a loved one die. We feel like we'll say something dumb that causes that person more pain so often we don't say anything at all. I'm realizing more and more that silence must be more painful than nothing said. Even just a "I'm sorry about your loss" is better than nothing. From talking with several moms recently, of children that have died, I can see how much they love to talk about their deceased children. So I'm trying to make a mental note that when I encounter these situations, to be sure I not only express my sympathy, but ask them direct questions about their loved one. Also perhaps I could share a good memory I have of that person. I don't know yet, but I imagine that being able to talk about the one that died would make the person feel closer to them again.

Just something else I'm learning from Lilly.

OK - Lilly just set the alarms off two times in a row. But I realized that I laid her down to sleep on her back instead of her side. Bad mommy! All is silent again ...

Alarming alarms

Over the last couple hours, Lilly has been setting off her alarms. A lot. Heart rate dropping some, breathing dipping too much. We don't know why but I'm trying not to panic. This was the day we were talking about leaving! The night nurse was worried she might be getting sick again. Thank you for praying and please don't stop!

Happy Lilly returns

"Up all night ... sleep all day ..." If you were in your teens or twenties in the early 90's you may recognize that chorus from a song by the heavy metal group Slaughter. It went through my mind over and over last night. After all Lilly's sweet snuggling and sleeping on me all day, she decided she didn't need to sleep last night. And it wasn't just that she wasn't going to sleep she was going to be downright annoyed about it. So I was up with her until 3:00 a.m. when I finally started feeling nauseous from lack of sleep. So I went to bed. Soon after she was up again and my husband got up with her. Lilly finally feel asleep in the early morning hours when it was time for us to get up.

She slept until early afternoon. And then awoke full of smiles. Her oxygen was turned off and stayed off all day until she started falling asleep a little while ago. The doctor today wanted to keep her today to observe her breathing without oxygen. All went great. So ... we just may be leaving here tomorrow! I'm really hoping so but trying not to get my heart set on it.

"How do you know what will happen tomorrow? For your life is like a morning fog - here a little while, then it's gone. What you ought to say is, 'If the Lord wants us to, we will live and do this or that.'" - James 4:14-15

A baby and a book. And about Facebook.

Today was an utterly perfect day. I spent the majority of it in a rocking chair, my Lilly snuggled in my arms sleeping, and a book in hand.

Lilly had a chest x-ray and an echo this morning. Both came back good. She's on a 1/2 liter of oxygen. There's not too much congestion left in her chest. The doctor wants to keep her in PICU until we leave, or they get too full. She said we should be leaving "within a few days."

There is a different cardiologist making the rounds this week. He is familiar with Lilly's case. I asked him what he thought about Lilly having a pulmonary artery band and if that really did do the same thing as a VSD surgery would. He said he thought the band was best for Lilly right now and that she could have the VSD surgery later if needed. He launched into a lecture on blood flow and heart and lung function, much of it sadly over my head, but he did seem to be agreeing with all Lilly's regular cardiologist had said.

Now on a completely different topic. Facebook. The giant networking lack of privacy monster that has taken control over the masses of the world. :) My dear aunt has flown up from Florida to take care of my children at home. She has been wanting me to get on Facebook for a long time because of the Trisomy 18 support group on it. I have been refusing because I am concerned about privacy issues and the amount of time that I am told that it can suck out of one's day. (I know I'm ranting and in the minority here - so no need to leave me comments why I'm wrong.) Anyway, my aunt signed me up and I have been receiving an almost overwhelming number of emails from people wanting to "friend me" and sending me well wishes. I don't mean to be rude or to hurt anyone's feelings but I just can't respond to all these things. Nor do I know how involved I'll be. Basically, if you want to reach me, e-mail me or leave a comment here on the blog with your e-mail address. If I use the Facebook thing at all it will only be for looking at the Trisomy 18 support group or to occasionally ask a question. There are only so many hours of the day and I'm already short on them!

To jump topics again I wanted to share a verse about angels. As my regular readers know, we do not have traditional healthcare but are in a nationwide Christian medical needs sharing group. What a blessing that has been with Lilly because they have reimbursed us for all her many, many medical expenses except prescriptions. The majority of people that mail us checks, include a card with a scripture, prayer, or other well wishes. One from the other day had a scripture written for Lilly:

[Jesus talking] "See that you do not look down on one of these little ones. For I tell you that their angels in heaven always see the face of my Father in heaven." - Matthew 18:10

What a blessed reminder that Lilly has an angel in heaven. And that we ALL do.

Sunny Sunday

Today was an incredibly quiet day. The best kind you can have in a hospital! Such an amazing contrast to last Sunday when I didn't know if Lilly would live. But God is faithful and is continuing to answer the prayers of His people.

Lilly spent most of the day napping to make up for yesterday fussiness and lack of sleeping. She work up after I ate dinner tonight so I got her up and held her for a couple hours. I got a couple small smiles, but she was really bad with making eye contact tonight. I dressed her in a clean snap up shirt and socks and re-tied her hair ribbons.

Lilly finished up her antibiotics today. They switched her back to her Enalapril from a heavier drug they had been using. She got the big IV that was in an artery at the top of her leg taken out. And now they're getting ready to take her off the high-flow oxygen and put her on the regular oxygen like she's on at home.

Thank you to everyone that has taken the time to leave comments or send me an e-mail. It's so encouraging to be able to hear from people in the "outside world".

"Two are better than one, because they have a good return for their work: If one falls down, his friend can help him up. But pity the man who falls and has no one to help him up!" - Ecclesiastes 4:9

No smiles for you!

Today my husband stayed at the hospital all day so I could go home and spend time with our other kids. I've been here a week straight so it did feel good to get a break. My son especially was so affectionate and kept throwing his arms around me and telling me how much he missed me. Awwwww! There was lots to talk to my daughter about so the day flew by. I'm back at the hospital now and my husband is home with the children.

My husband said Lilly had a rather fussy morning but a pretty good afternoon. The doctor said that her fussing and squirming was a good sign to show that she had energy to do all that. They've really been cutting her oxygen down. She's at 2 liters now. I don't know if he got to see any smiles from Lilly today. But I did not. When I came back in tonight Lilly got MAD at me! She looked at me and fussed and fussed, just telling me all sorts of complaints for a good 45 minutes. I don't think she appreciated me leaving the hospital and not taking her with me! I finally got her to sleep by shaking her bed. I pray she has a good night not only for her sake but mine. She was awake so much last night that I didn't get much sleep and I feel like a zombie.

Oh no ... she's waking up now ...

Smiles for Mamma and Daddy!

Tonight the nurse needed to change Lilly's bedding and she asked if I wanted to hold Lilly. What kind of question is that? So I got to hold Lilly in my arms for an hour. It was so wonderful. And the best part was that Lilly just kept smiling at us. Beautiful, wide smiles that warmed my soul.

Lilly got a different doctor tonight at shift change. He wants to be called by his first name and has a tattoo. Lilly and I aren't sure that is very "doctorly." But he has a big smile and is very optimistic about Lilly. We like that!

The plot thickens ...

Lilly is sleeping at the moment with one arm thrown up high overhead and her hand in a fist. All I can think of is "raise your fist and yell!" I'm taking pictures while here and will load those and post them when I get home.


Lilly is doing well right now. Her eyes looked normal this morning and she acted like "regular Lilly." They turned her oxygen down to 4 liters this morning. (It had been at 5 liters all yesterday.)


Late yesterday afternoon Lilly got really fussy. I was trying really hard not to feel panicky when she kept setting her alarms off. (There are definite battles between logic and emotions going on in me. The logical part was talking sense but the emotional part got so tense that I thought I'd throw up.) Finally the nurse figured out the problem. Lilly was hungry! Of course! It was so simple I wanted to cry with relief. Lilly had been off feeds since 1:30 a.m. (As a precaution for extubating her. Pulling out the breathing tube makes one gag and they didn't want her throwing up and then possibly aspirating.) Lilly does NOT like being hungry! She is used to a full belly. So the nurse got clearance to start Lilly on Pedialyte. (To be sure she tolerated that then go back to breastmilk. Which she did at midnight.) Lilly settled down really fast and was quite content until bedtime.


At bedtime she was very very restless and got increasingly agitated. Tylenol didn't help take the edge off. So finally after an hour of being unable to soothe her I agreed to let the nurse give her a small dose of morphine. (Ugh! I hate my biddy baby on all these drugs!) Of course that that did the trick and Lilly slept until morning.


Lilly's congestion in her chest is breaking up and she's getting some nasty looking stuff out. Her temperature is remaining normal. Lord willing the virus has about run it's course. The doctor is still unsure about her and wants to continue moving very slowly with her. (We may be here another week.) Though as he turned to leave the room this morning he said in an almost surprised voice, "she really is a strong one!" (That was very satisfying to hear!)


I had a long talk with Lilly's cardiologist today. It seems every time I think I get something straightened out in my mind, I find out that I really don't. (How dense can I be??) Dr. R, Lilly's cardiologist, probably wonders where my brain is as he patiently discusses the same things with me over and over. I guess I can only understand bits as we go and as we're confronted with different situations. First Dr. R emphasized that Lilly's heart function is back to normal and it really is quite good (when functioning normally). So from his viewpoint, her heart is not "wearing out." The pulmonary artery band, which still fits perfectly, is doing a great job. Because it is working right, it is handling what a closed VSD would do. So in his eyes, because she has the band, closing the VSD won't really make much difference in Lilly's overall health. Meaning just because her VSD is closed, it won't protect her from viruses and germs any more than the band is doing now. Hmmmm. Not what I was thinking. (I want to talk to the surgeon in S.C. too but if he agrees with this then that could change our surgery plan.) Dr. R says that when Lilly stops breathing, that that is probably from a problem in her brain. (We do know that Lilly is very developmentally delayed in her brain. So I wouldn't be surprised if she had all sorts of brain signal problems.) Finally, we discussed again the problem of her left ventricular hypertrophy. He was very pleased to see that in her last echo from the other day that there had been no further thickening! (Thank you prayer warriors!) If it does continue to thicken, then Lilly will most likely have a heartattack when it gets really bad.


Deep sigh. So many things to think through and enormous decisions to make. When I look at Lilly lying in her bed here I just want to be able to pick her up and hug her and make everything OK. But only God can do that. I hear so many opinions from doctors and parents in our situation and nurses with what they've observed but none of them really know what's best for Lilly. If only God had given me the printed version of that book - Guide for the Proper Care of Lillian Eva.

Speaking of picking up Lilly, tomorrow it will have been a week since she's been held. That alone seems unhealthy!


As an aside for people that know our family situation - so many are curious as to what our arrangement is with Lilly in the hospital. Our other two children are at my mom's. I haven't left the hospital since we got here last Saturday. My husband has been going to work each day and then coming back here to stay the night. (He said he hoped no one noticed that he wore the same clothes to work several days in a row.) Mom is getting ready to go out of town so my aunt from Florida is flying in to help.

L.G., mama of Emily (a 5 year old with Trisomy 18) e-mailed me something the other day that keeps running through my mind: when fear knocks - faith answers. Today I read a quote by Oswald Chambers: "Faith by its very nature must be tried." OK - so faith is like exercising. I think I've had enough of a workout for awhile! :)

"Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything." - James 1:2-4

Extubation successful!

The extubation went smoothly and Lilly is now breathing well with an oxygen cannula in her nose. They will work at turning the oxygen down throughout the day. Lilly kept working her mouth after the tube was out and moving her jaw funny like she thought "what happened to that thing?" She also had some things she had to tell me, now that she can talk again. Though with the first vocal noise she made she looked like she surprised herself. Now she is napping.

God is faithful ... God is kind ... all the time!

UPDATE: Please keep praying that Lilly will breathe well. We don't want her to have to go back on the breathing tube. They are still hearing some "crackling" in her chest.

Extubation time set

The doctor said the plan was to pull the breathing tube about between 10:30 and 11:00 this morning. They cut Lilly's sedative back some so she would be more alert for it. Lilly has been wiggling all over the bed this morning and is chewing and sucking on the breathing tube like crazy.

This morning our pastor came to pray over Lilly. One of the things he prayed for was for the doctor to feel confident about extubating Lilly. (Yesterday the doctor seemed hesitant still about extubating today.) Shortly after the pastor left, the doctor came in to examine Lilly. Then he said "I'm suddenly feeling very optimistic about extubating this morning." LOL! Way to go Holy Spirit!

Fever gone (stay away!)

Lilly's fever was gone by this morning, thank God. Please pray that it stays normal. Because if all is good today, they will take the breathing tube out of her early tomorrow. (They'll stop her feeds at midnight so that her tummy will empty first.) She's developing bacteria in the breathing tube, which is normal, but still not good and it means it needs to come out soon. They're tweaking her antibiotics to deal with it.


The doctor feels that because Lilly is so medically fragile that she only has a bit over 50% chance of handling it OK when she comes off the ventillator. He apologized that he gave such a low pecentage. However, I know that Lilly is one tough cookie - and she seems to keep an angel with her - so I probably have a lot more confidence than the doctor that it will be OK.


Lilly's chest x-ray this morning looked good. They also did an echo on her - I haven't heard back on that one yet. She was very annoyed after the echo and got to coughing so much she spit up a lot of milk, poor baby. It is strange to watch her cough because it is completely silent, due to the intubation. They gave her a little extra sedation and cleaned her up and now she is peacefully zoning out. (I'm hoping she won't have a lot of drug withdrawals from all the stuff she's on.)

I often feel so bad for Lilly and all she goes through and find myself telling her when she's upset, "It's so hard to be Lilly." I was thinking about that yesterday again in a different way. I love to read but rarely have time to lately. (Wonder why??!!) But one benefit to these long days here is that I can do a lot of reading. Yesterday I read a book called Pieces of the Pearl: Memoirs of a Foster Child's Triumphant Transformation by Teresa Ann Winton. (I used to know Teresa in the late 1990's when I lived in Virginia.) By clinging to God, Teresa overcame an incredibly horrible childhood. As I read about the intense emotional pain she so often went through I thought "It's so hard to be Teresa." Then the more I thought about it I thought about how probably most of us have had to live through some really terrible things, hurting emotionally, physically, and/or spiritually. I know I've had to deal with extremely difficult and stressful emotional times in the past - and now with Lilly. And my husband has had physical pain in childhood, emotional pain from losing a sister, and now Lilly. That made me think that as physically difficult life is for Lilly, she does not have an emotional rollercoaster to ride on. When she is feeling OK physically - she is a happy little baby. So for her there are days were it is NOT "hard to be Lilly." We each have our own mixed bag to deal with.

I thought about how the apostle Paul was tormented by a "thorn in his flesh." He begged God three times to remove it. God did not and answered "My grace is sufficient for you, for my power is made perfect in weakness." - 2 Corinthians 12:8

God doesn't promise to take away our "thorns" (and some people sure seem to have bigger ones than others!) but He will never leave us. He is the one constant we can count on in this messy life.

OK - so now you see that not only do I have a lot of time on my hands to read -but also to think! Not something I have much time for at home either. :)

Temperature creeping up and down

Lilly slept most of the day today. Her temperature has started creeping back up some. It's a little over 100.7 degrees right now, down from 101.5 two hours ago. Her body must still be fighting whatever it is.


I spoke to the surgeon in S.C. that is open to doing Lilly's heart surgery. He said that Lilly needs to get over this and then stay healty for 6 weeks before she can have the VSD repair surgery.

Sleeping beauty continues to recover

Lilly had a good night and is actually still asleep now. (It is 10:45 a.m.) The doctor asked me if that was good or bad. I said "good" because Lilly was awake almost the whole day yesterday and sometimes she does that and then will make up for all those lost naps the next day.


Lilly is back up to her normal feeds (breastmilk) rate. She had a chest x-ray this morning and it didn't really show much. They keep telling me how well she's doing. (She is full of surprises.) She's been started on a drug that is supposed to help her blood pressure and make her stronger and ready to come off the ventilator. They are going to play it cautious though, and as long as she continues to do well, wait until Thursday to extubate her. (Pull the breathing tube out of her.) One part of me wants them to hurry and do it now, since they initially said they would today or tomorrow. But I have found I am learning A LOT of patience being in here and learning not to put my hopes on anything much. Everything takes longer than they initially say. And after what happened Sunday I'm not anxious to push Lilly in any way.


I read an article this morning that said that 84 - 91% of babies that are diagnosed with Down syndrome prenatally are aborted. First I was surprised that number was so high. Secondly I thought about a family at church that were told their oldest child was going to have Down syndrome was perfectally healthy when born. And third I wondered why. I guess it shows the state of a selfish society.


Finally I thought of a recent conversation with a neighbor. He was talking about a family that has two teenage sons with Downs and how bad he felt for the family because of the burden those two boys were. I'm not sure if he realized the "burden" Lilly is - since she is still a small baby. Notice I said "burden" in quotes. This is a topic I probably never really thought much at all about before because I come from a healthy family and was never really around special needs kids. But now I have a very needy child. Lilly will most likely never be able to do much of anything for herself. And yet would my family and I call her a "burden"? Absolutely not. We have found incredible joy in doing everything we can for Lilly. Even my two-year-old loves to just sit and hold her and sing to her. Yes sometimes I get a little frustrated with all her medical equipment but that has nothing to do with Lilly and is more that I'm sad for her having to have all this stuff that places some physical limitations on her/us. "Normal" babies have swings and exer-saucers and playmats around the house. Lilly has a pole with a milk bag and feeding pump and an oxygen condensor sitting around.

As I've continued off and on to think of my neighbor's comments I've thought about how as exciting as it is when my other kids do something new, that when Lilly does something new (like when she first started smiling) we were all just thrilled beyond measure. And in seeing Lilly and what she goes through, has taught us all to have deeper compassion for others. I really don't have the time to list the many many things that we have all learned from Lilly but needless to say that we are so grateful for having her in our lives. Special needs children are certainly not burdens!

By the way, an interested statistic I learned yesterday from Ann Barnes was that of the 10% of Trisomy 18 children that make it to their first birthday, 60% of those will make it to 5 years. Come on Lilly! You have a little less than 2 months to go! And if we can get her heart fixed, I think she'll make it.

Lilly's life glorifies God and I pray He will continue to allow her to do so.

"Clap your hands, all you nations; shout to God with cries of joy. How awesome is the LORD Most High, the great King over all the earth!" - Psalm 47:1-2 (Ha! We go to a church that sings a lot of psalms including this one and I was not able to write that scripture without singing it in my head. Some of you are probably singing it now too ...)

A long but calm day

Lilly has done well today. She has been awake for most of the day and very responsive to our voices. She is still intubated but is mostly breathing on her own. The doctor said they'll leave the breathing tube in her for another day or two, just to give her body a rest from working hard so she can keep fighting off the virus. They don't know exactly what she has. But several doctors have said that Lilly is just so medically fragile (because of her heart) that any little thing can set her off.

I don't think I've ever been around anyone intubated before. It is strange. Lilly can't make any noise and when she cries she is silent. (I told her perhaps I could just cry for her - it makes me so sad to see her face crumple but no sound come out of her mouth.) Thankfully it's not happening much.

We had a visit from Ann Barnes today, the author of the Trisomy 18 carebook that I have posted farther down, along the right column of this blog. We've emailed and talked on the phone, but it was nice to meet in person. Ann had a daughter named Megan who had Trisomy 18 and lived to be almost 20 years old! It was wonderful hearing her talk about Megan.

I've been on an adrenaline rush today, just so happy that Lilly is still here and doing better. Her monitor alarm went off once this afternoon (due to malfunction) but I felt a panic as I jumped to look at it. Whew!

"The LORD is near to all who call upon him, to all who call upon him in truth. He fulfills the desires of those who fear him; he hears their cry and saves them." - Psalm 145