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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

Monday, May 30, 2011

Happy Memorial Day!


Happy Memorial Day from squeaky clean Lilly!

We have a 96-year-old veteran that lives across the street from us. He survived the Bataan death march in World War II and was a prisoner of war for 3 years. He has many fascinating, and horrible, stories about that time. My daughter T. made him a "thank you" card today.

We continue to be tickled by Lilly's occasional sneezes. It's so strange to think that she never sneezed when she had the NG tube in her nose! I wonder if that is normal.

Lilly had physical therapy last Friday. Her therapist is working a lot to get Lilly to turn her head to the left normally. Ever since that session, Lilly has been turning her head to the left lot more on her own. Yay! I'm trying to work with her each day too, using exercises I saw the therapist do with her.

Lilly has always enjoyed looking at different shooting targets that I have printed off a free target website. Now I have pulled out some of my son's brightly colored books to show her. She is taking some what of an interest in them. Keeping her eyes focused for long doesn't seem to be easy for her. She's got her first eye doctor visit scheduled for early July.

Doctors doctors doctors ... Lilly will be seeing her pulmonologist Friday morning along with her surgeon for a g-tube follow-up. And then her physical therapist that afternoon. I'm still playing phone tag with her audiologist to see about an appointment for the complete results of her hearing tests. And next week it's back to the cardiologist. I think my daily calendar is one of the hardest working things I have in the house!

"Therefore let everyone who is godly pray to You while You may be found; surely when the mighty waters rise, they will not reach him. You are my hiding place; You will protect me from trouble and surround me with songs of deliverance." - Psalm 32:6-7

Saturday, May 28, 2011

Super Supplements


Tonight is the night of our family camp out. Only Lilly and I are just camping out in spirit. The rest of the family is in the backyard in a tent. (The 2 older children have been asking to do this for a long time.) But the thought of lugging all of Lilly's equipment out and running extension cords to the house, was too much for me. (Add that to us trying not to have her out in the pollen very much.) So Lilly and I are blogging before we have a girls only slumber party. Not as fun but it will do.

Today I found some outfits I liked for Lilly at the thrift shop. Some were impractical now that she has the g-tube. Others were larger sizes. I have a really hard time with those. It's hard to know what will fit her in what season. She's almost 11 months old and is just now starting to grow out of size 3 months. And the other problem is I feel panicky at times wondering will she even still be alive then to wear whatever it is. So I usually just put the stuff back. I guess it sounds like I don't have much faith when I think like that. I do though - and it's growing. (Another Lilly lesson for me.) I am a "work in progress" for sure.

I have always added a supplement to Lilly's milk called Advanced Ambrotose (by Mannatech.) This is a glyconutrient that promotes immune system health at the cellular level. There are a lot of documented studies showing this has helped others with problems like Down Syndrome and autism. Now we are adding two new products from a company called RBC Life. This company and some related people were generous to give me some free samples when I was pregnant with Lilly. One of those freebies was a product that is now available to the public called VitAloe. This is another immune boosting product, which Lilly badly needs. It helps with digestive issues too. You can read a summary of this product at: http://www.rbclifesciences.net/pdfs/vitaloe.pdf The other new product is called Stem-Kine. This one is really interesting as it regenerates damaged tissues. It supports bone marrow to produce more stem cell. See:
http://www.rbclifesciences.net/pdfs/stem-kine.pdf
Lord willing, these products will really help Lilly's body.

I am down to just needing to lose 13 more pounds to be back at my pre-pregnancy weight. I read Dr. Sears' High Speed Fat Loss in 7 Easy Steps and one of the recommendations was to take a 600 microgram chromium picolinate supplement once a day. I started in early May (500 mcg) and have lost 5 pounds. Really exciting since I've spent much of the month with Lilly at the hospital and didn't do much other than eat and sit.

Grace and peace!

Wednesday, May 25, 2011

Better days

Weight check = 10 lbs. 9 ozs.

Life has been extra busy since we've been home from the hospital. I feel like I'm still trying to get unburied. (I have a bunch of e-mails that I haven't had time to answer, but I promise I'll get caught up soon!) But it is good. Lilly is feeling very well and is happy and smiling a lot. She didn't talk at first but that has come back in the last couple days.

We have noticed what a big difference it is making in Lilly's congestion by not having the NG tube in her nose anymore. There are many days now where I don't have to use the Nose Frieda (suction) on her at all. She's also started sneezing some (she never used to for some reason) and it's pretty funny to watch. She will scrunch up her whole face, then turn beet red, then out comes a quick little sneeze.

I gave Lilly a little yogurt to try yesterday and she ate it pretty well. She seemed to like the consistency.

The other day I walked into the room where Lilly's pulse ox is and found my 2.5 year old son sitting there with it. He had plugged it in, turned it on, and hooked the sensor up to himself! All this medical stuff is completely normal to him.

If you are a fan of pug dogs, look close at Lilly's onsie. It says "pugcake." That was a gift from Lilly's aunt that has a pug and all sorts of pug paraphernalia.

"Lord, you are our Father. We are the clay and you are the potter. We are all formed by your hand . . . look on us, we pray, and see that we are your people." - Isaiah 64:8-9

Sunday, May 22, 2011

Hannah Grace's story

Lilly has been doing well and I've been so busy trying to catch up at home a bit. But it's wonderful! We visited Lilly's Pop today in rehab. (He's still slowly recovering from his stroke this past winter.) Today is his 78th birthday. He had lots of smiles for all of us, though still can't talk.

While at our last hospital stay, a mama of a Trisomy 18 angel, named Hannah, shared Hannah's picture and story with me. I urge you to read a beautifully written story about Hannah's short life at:


http://kwantfamilycorner.blogspot.com/

Friday, May 20, 2011

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

Thursday, May 19, 2011

Back home where we belong




Weight check= 10 lbs. 1.5 oz. (Weight loss at hospital. Lilly's working on it - she pigged out on coconut oil last night.)


We got home late yesterday afternoon! I've always liked being at home, but I have extra appreciation of it now. When I laid Lilly in her bed last night she just couldn't stop smiling. Even babies love their own beds.


By the way, my brother P. took the liberty of fixing the time lag for my posts. So now the time you see I published the post on is the actual time.


I'll post our hospital-stay-in-pictures as soon as I have a chance.

Wednesday, May 18, 2011

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!

Blog publishing time - 3 hour lag

I don't know if it's something I can fix or not - but when Blogger publishes my posts, the time that appears is 3 hours earlier than it is where I'm at. Just wanted to mention that in case you're trying to figure out a timetable of when some of this stuff is happening.

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!

Tuesday, May 17, 2011

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

To poster Kwantfamily Corner

I would love to read your story about your little Hannah and see her picture. I am glad your precious baby is in Jesus's arms and has no Trisomy 18 in heaven. I know your own arms must ache for her though. What a blessing beyond words it is that you will see Hannah again one day and will be with her for eternity.

If you would leave your email address as a comment, I will email you and then delete your email address from the comments.

Thank you for contacting me!

Monday, May 16, 2011

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.

Sunday, May 15, 2011

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

Saturday, May 14, 2011

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 ...

Friday, May 13, 2011

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

Thursday, May 12, 2011

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!

Wednesday, May 11, 2011

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. :)

Tuesday, May 10, 2011

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 ...)

Monday, May 9, 2011

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

The Lilly with nine lives (meow!)

Lilly had a great night and seems almost alert, in spite of her sedation, this morning. No fever. The danger seems over for now. She's been dubbed "Lil' fighter" and amazes us all. To God be the glory!

Sunday, May 8, 2011

A Frightening Morning

This morning I was sitting by Lilly's bed and holding her hand while she slept. I was praying and dozing off and on. Suddenly the door burst open and about a dozen medical people flooded the room. Lilly had stopped breathing and her heartrate was low and dropping.


I got out of the way and tried to see what was going on. It was unreal. Like watching a TV show. Lilly was on the bed and they were doing things to revive her. Paddles, shots, and I don't know what else. I can't remember a lot. It was a blur.


They intubated Lilly so that she doesn't have to breathe on her own. (It is a tube down her throat into her trachea by her lungs.) The nurse just told me that Lilly is breathing over it some which means she is breathing some on her own, which is of course good. They are also giving her blood. She is sedated. Thankfully her fever is gone (it was 103.2). She is laying in the bed and seems restful.

Poor baby. She makes our hearts ache for her.

My husband was home with our children when it happened. But God sent support right when I needed it. The son of a family at church happens to be here on the same floor as Lilly and his dad was in the room with him. And another family from church was still here, after coming by to bring us breakfast. So S.L. and K.A. came into the room to stay with me until my husband could come. It was so reassuring just to have people here that I knew and that prayed over Lilly. The hospital chaplain came in too and prayed for Lilly.

Lilly's echo results just came back and are normal for her. So we'll just keep waiting and watching and trusting to see what God's plan is for Lilly.

"'Because he loves me,' says the LORD, 'Iwill rescue him; I will protect him, for he acknowledges my name. He will call upon me, and I will answer him; I will be with him in trouble, I will deliver him and honor him. With long life will I satisfy him and show him my salvation.'" - Psalm 91:14-16

A virus for Mother's Day

Lilly had a restless night and has a temperature this morning of 103 degrees. So it seems that she has some sort of virus instead of "just a cold." She is still on the high flow oxygen and her breathing is like grunts. She seems frustrated right now and I think a big part of that is she's hungry! I've learned well from our past four hospitalizations that she does NOT like only getting IV fluid. She wants her little belly full of milk. I am trying to convince the doctor to start her back on her feeds. The doctor said it would be discussed during rounds this morning.

I admit the complaint flashed though my head "Ugh -we're in the hospital on Mother's Day!" (I want to be with my other two children too.) But then I immediately thought "Lilly's still alive! Yay!" What more could I ask for? :) Thank you Lord!

Saturday, May 7, 2011

Our home away from home

Lilly and I are back at the PICU and will be here for at least one night. I say "back at" - we're at a different hospital than we were earlier in the week for the scope and g-tube surgery. (We were at this one this past February when Lilly had a virus.) This hospital is closer to our home and well, if I'm going to stay in a hospital, I admit I like this one a whole lot better. The care is just as good at both places, but here it is much more comfortable for the parents. Any readers that have spent much time in hospitals will understand how impressive this place is when I say it there is a bathroom - with a shower! - in the room, a couch that turns into a bed (not super comfy but it sure beats a chair), and internet access on the room TV. Oh - and a nice big window with decent view.

But I digress in my weariness. Lilly is stable right now. Her heartrate is much more normal (it was close to 200 bpm early this morning) and she's breathing great with a little high flow oxygen. She is sleeping a lot. But wakes up every 30 minutes or so and fusses. When she does I roll her to her other side and calm her and then she'll go back to sleep. She's gotten mad a couple times at the doctors poking and prodding and stays worked up for awhile.

They've run tests and done a chest x-ray but haven't really found anything. Right now they're thinking it's just a cold. ("Just a cold" - that can be so very difficult for a Trisomy 18 child.) Lilly's chest is "crackly" sounding but praise God her lungs sound good and not "wet." So we're waiting, praying, and will just see how she does.

The nurses remembered "Miss Fiesty" from our previous stay and flocked into the room to see us. They were quite tickled with the amount of "chunk" Lilly has put on since February.

Our whole family came with Lilly to the emergency room this morning. My husband finally took the kids home mid-afternoon. I was so glad they could be with us. After everyone left it felt so quiet as Lilly and I were left alone in the emergency room waiting for a bed to be ready for her in PICU. One scripture brought me a lot of comfort though - it's how King David describes what sounds to me like a hug from God:

"You hem me in -- behind and before; you have laid your hand upon me." - Psalm 139:5

Though coming here today was NOT my original plan for my day, God knew about it before Lilly or I were ever born:

"All the days ordained for me were written in your book before one of them came to be." - Psalm 139

Thank you everyone for your faithful prayers for Lilly. They are her lifeline!

Please pray - Lilly on way to emergency room

Please pray - we're leaving home in a moment to take Lilly to the emergency room. Her heart rate is staying pretty high and she can not breathe well without staying on oxygen. She's had a bad cough since her surgery, they said she was clearing things out. But it's still here so I wonder if she has a virus.

Friday, May 6, 2011

Not so good day

Today was our first full day back home but it wasn't a very good one. Lilly isn't feeling well. I knew she didn't feel good because she wanted me to hold her most of the day. And she had crying spells where she cried with her eyes closed. (That is significant because when she's crying just to complain she cries with her eyes open.) I learned to "vent" (or burp) her stomach with the tube and that seemed to help some. I assume she's just still in recovery and getting the drugs and all out of her system. (We're supposed to call the doctor if she runs a fever or throws up. She's done neither.) Poor baby. I don't like seeing any of my kids sick, but it's the hardest with Lilly. (Honestly she just scares me when she's not feeling well!)

She's sleeping in my lap now though, so here's a run down of her last hospital stay.

Tuesday morning she had a broncoscopy to see if there was anything, besides her tongue, causing her obstructive apnea. Turned out that Lilly's passages were actually quite clear. The pulmonologist was amazed that the results were so much better than she was expecting. Trisomy 18 children have notorious "floppy passages" in their airway. Lilly only had a tiny bit way down in an area that shouldn't interfere with anything. Her adenoids looked good and she had very little sign of reflux. The pulmonologist said Lilly has actually grown some since she last looked at her and that is helping.

Next Lilly had the g-tube put in. That went well. The surgeon said Lilly's stomach looked normal. And that Lilly handled the anesthesia very well. (The anesthesiologist had seemed quite nervous about putting Lilly under.)

Finally Lilly had a hearing test. That wasn't so great as it showed that Lilly has impaired hearing. Apparently her ear canals are so tiny that they couldn't even see her eardrums. We're supposed to get full test results from the audiologist soon. From what I've read, more than half of Trisomy 18 children are hearing impaired. So this isn't anything abnormal really.

Now here's the rest of the story in pictures ...

Lilly recovering from surgery:



Lilly in her room in PICU:




Lilly's new 'do - courtesy of the night nurse who gave her a bath:




Lilly's new g-tube is a type is called a MIC-KEY. She began feeding through it 24 hours after surgery. She was given Pedialyte for 2 hours first. That seemed to bother her stomach a little. Then after that it was just breastmilk and she did great. The feeding tube in the picture can be removed and the g-tube "capped." I hate a hole in Lilly's tummy, but believe it's better for her than the NG tube. Since Lilly is still so little, they put her on continuous feeds. That means we'll still be lugging around the pump on the pole to feed her for awhile yet. (Admittedly disappointing. But we'll keep on practicing the mouth feeding! We'd love for the g-tube to eventually be useless!.)








Lilly felt terrific yesterday and was awake almost the whole day and smiling and talking. We were released from the hospital in the late afternoon.





I'm thankful that the g-tube seems simple for the most part.
Lilly does seem to be very relieved to be rid of the tape on her face. I'm praying Lilly feels better tomorrow. Much much better.

"Glory and honor to God forever and ever. He is the eternal King, the unseen one who never dies; he alone is God. Amen." - I Timothy 1:17

Thursday, May 5, 2011

Home!

We are home from the hospital! Lilly had a great day - she was awake and smiling and talking for much of it. Feedings through the g-tube are going well. I'll post more details asap!

Right now we're thanking / praising God that we are home and all together again! :)

Here is a little video I took today of Lilly:



video




Wednesday, May 4, 2011

Happy 10-month birthday, Lilly

Weight check = 10.7 lbs.


Lilly celebrated her 10-month birthday by her first g-tube feeding. Please pray that she will tolerate her feedings.



Lilly is tired of being at the hospital and hopes to go home tomorrow.



(This update is again written by Lilly's big sister, T.

Tuesday, May 3, 2011

Miss Spitfire is doing fine

Lilly came though her surgery fine. When she woke up she was MAD! The nurses called her little "Miss Spitfire". The scoping went well and no problems were found. A hearing test revealed some hearing problems. Lilly is now resting comfortably.

(This update is by Lilly's big sister T.)

Monday, May 2, 2011

G-tube surgery tomorrow

We learned today that we are supposed to have Lilly at the hospital at 6:30 a.m. tomorrow morning. They will do the scope first, then the g-tube insertion. Lord willing Lilly will handle everything just fine. I have no idea if I'll have internet access at the hospital, but if not, I will have my daughter T. post how surgery goes.

Lilly had her first official physical therapy session today. It went very well. The therapist saw what all Lilly could do, what her muscle tone was like, etc. I learned some new positions for Lilly to work on. Future sessions will be once a week on Fridays.

I hate that my baby has to go back in the hospital tomorrow but trust it's for her best. And I pray God will protect her and continue to let other doctors see that Trisomy 18 babies can and do thrive.

"What is faith? It is the confident assurance that what we hope for is going to happen. It is the evidence of things we can not yet see." - Hebrews 11:1

Sunday, May 1, 2011

Pretty white flower baby

I love Lilly in white. It always makes me think of an Easter lily. :)

Lilly is still pretty congested at times, especially in the mornings. We're praying hard that it won't turn into anything that will postpone Tuesday's g-tube surgery.

On Saturday, I watched the g-tube dvd that the hospital gave me. Wow. There was a lot more involved than I thought there would be. Have I ever said that I never wanted to be a nurse??!!

Lilly's physical therapist just called and Lilly has her first session scheduled for tomorrow morning. We are looking forward to that!




"Moses kept right on going because he kept his eyes on the one who is invisible." - Hebrews 11:27