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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

Thursday, April 28, 2011

The Chub-Factor

Weight check = 10 lbs. 8 oz. !!
Height = 23 inches

Lilly had an appointment with her pediatrician today. She in the "less than 3 percent" percentile for height and weight. But her doctor said for children with genetic problems, like Downs Syndrome, Lilly is actually in the 25th percentile. Sounds good to me!

Lilly still has a lot of extra congestion and a bit of a cough. But her lungs sounded clear. So I am hoping it's just allergies. She did seem to feel a bit better today.

The doctor was tickled by Lilly's chubby arms and legs. Especially the cellulite on her thighs. My personal favorite is the roll of fat across both of Lilly's knees. (2nd picture)

After the doctor, Lilly and her siblings got to visit daddy at work. This was mainly to show my 2-year old that yes, daddy does go somewhere every day and works. We got to peek in at his Uncle P. who works at the same place which was fun. I had Lilly in a wrap on me to help keep germs off her. Most people peek at her at a respectful distance. It was fun - it was sort of like having a celebrity with me.

Lilly got to take a leisurely bath when we got home. She enjoyed stretching on the bed afterwards. She has been trying to lift her head lately. She can lift her chin up and part of her head - but the top of her head is still too heavy. I also changed her NG tube for hopefully the last time EVER! I just can't wait to be able to see her entire face without tape and no longer be chained to a pump. I know that how I feel must be minor compared to how Lilly will feel when that thing is finally out of her for good.

My husband learned today that we can set up Lilly's echo in S.C. for one day and then have Lilly's VSD repair surgery lined up for the following day. (Assuming they don't find anything that makes them change their minds of course.) We are both thrilled about it. My husband is going to call the surgeon tomorrow and see when we might schedule it for.

"Glory be to God! By His mighty power at work in us, He is able to accomplish infinitely more than we would ever have to ask or hope!" - Ephesians 3:20

News clip - little girl with Trisomy 18

Lilly's little friend Giuliana was featured on the news in her home state. This little girl was born exactly one month after Lilly. Her mother as been a big encouragement to me and is the one that got me to contact the surgeon in S.C. that is being so positive about Lilly's case.

To watch this video go to:

http://www.wfmj.com/category/179433/video-landing-page?clipId=5795164&topVideoCatNo=127724&autoStart

Wednesday, April 27, 2011

The 2nd opinion

videoEarlier this week Lilly had her first bite of pureed sweet potato. This video shows that first bite as she considers it. She has eaten sweet potato again and seems to definitely prefer it over banana. But it closely ties avocado.


We heard back from the surgeon in Charleston, S.C. whom we recently contacted to get a second opinion from about Lilly's heart problems. (VSD and left ventricular hypertrophy.) He reviewed Lilly's records and latest echo with several cardiologists. They concluded that they could not see any reason not to close the VSD. But they want a complete echo done at their office.


What wonderful news! It made me so hopeful!


Lilly woke up at 4-something this morning sounding a bit congested. I cleaned her nose out. She didn't want to get back in her bed so we had some snuggle time. It was such a blessing and well worth missing an hour of sleep.


Lilly didn't have too good a day though. She wanted to be held a lot so I knew she wasn't feeling too good. She spit up thick mucous several times today and I have been busy keeping her nose cleaned out. She seems a bit better this evening though and is very vocal right now.


I haven't put oxygen on her at night for the last couple nights. The oxygen thing has been a toss up. It is supposed to help Lilly sleep more comfortably, etc. But so far, it has only upset her and she doesn't sleep very well with it nor keep the cannula on all night. (That being said I plan to put it on her tonight since she has had more trouble keeping her oxygen levels up today.) I'm wondering if that might change once the NG tube is out of her nose.

Whew ... what a roller coaster ride the Trisomy 18 life is!


"Let the peace that comes from Christ rule in your hearts." - Colossians 3:15

Saturday, April 23, 2011

Uniform violation!


I've been keeping Lilly hooked up to the pulse ox during naps. Her numbers have been dropping into the upper 80s some so we're hooking up to oxygen at night. That half liter puts her level at 99-100.

Putting on the cannula is still making it much harder for Lilly to settle down at night. Rats! Just when I think I can get a bit more sleep.

Two nights ago, I put a hat on Lilly so I could cinch the cannula tighter. The cannula actually stayed on that night though the hat was off by morning. Sneaky Lilly's latest talent! Last night I tried taping the cannula to Lilly's hat. Everything was still in place when I woke at 3:20 a.m. to peek at her. But both were off when we got up this morning. We'll get it figured out I guess. (Several have suggested a mask - but it won't work with her sleeping position.)


(Last picture) Lilly's daddy works at a private Christian school that has rules for dress, hair, etc. To me that makes Lilly's wild hair extra funny. She has crazy cowlicks on top which push her hair up into a natural mohawk. Punk rockers - be jealous! It's all natural ... I think it's so cute and think God's sense of humor comes out in how He designed Lilly's hair.


[Jesus speaking] "But the very hairs of your head are all numbered." - Matthew 10:30

Wednesday, April 20, 2011

10 pounds!!!!

Lilly is smiling up at big brother and telling him that she finally weighs 10 lbs. Thank you God!! It took over 9 months to get to this point.

I have a new best friend. Lilly's pulse ox. I hooked it up to her again at nap times today. Her levels are supposed to stay over 89 and she did that during both naps (without being hooked up to oxygen). I noticed that her levels were slightly higher when she slept on her side as opposed to her tummy. Both but were good. And they tell me that I am not going to worry about that cannula right now. I am just going to keep using the pulse ox for sleeping though to monitor. And we'll see what happens.

I like the pulse ox too because it is helping me see what's going on inside Lilly and I'm able to see how her breathing and heart rate are in different situations during the day. But as useful as it is, I take the most comfort in knowing God is on the throne and watching over Lilly and that He loves her even more than I do! (How is that possible?)

"The LORD reigns; let the people tremble: he sits between the cherubims; let the earth be moved." - Psalm 99:1

Tuesday, April 19, 2011

Quick update

I didn't hook Lilly up to oxygen last night and we both slept better and felt better today. It's amazing how getting better sleep can make one's outlook on things!

I got the pulse ox running today and hooked up Lilly during her naptimes. She did good. Her oxygen levels only dipped under 90 one time - and that was into the mid-80s for a few seconds. (It would be interesting to hook up each person in the family some time to the pulse ox. I bet every one of us has some sort of dip while we sleep.)

In yesterday's post when I mentioned how much we're paying to rent the oxygen equipment and pulse ox I neglected to say that we will be reimbursed. We don't have health insurance. But we're in a Christian medical needs sharing group called Samaritan Ministries. So far with Lilly - every cent of her medical bills have been completely reimbursed to us by Samaritan members, except for her perscriptions. So even though we're paying out thousands of dollars a month for Lilly's bills, we get reimbursed quite promptly.

Monday, April 18, 2011

I hate cannulas ...

Happiness is snugged against Daddy ...

It's costing us $206/month to rent oxygen and supplies. (Not counting $185 for the pulse ox which I have yet to figure out!) And right now I am wondering how much we'd have to pay if Lilly and I just threw all that stuff out the window. At night when I put the cannula into Lilly's nose she starts crying. It can take her well over an hour to settle down. By that time it's midnight and I'm so tired I want to cry too. The oxygen condenser is really loud and puts out so much heat that by morning our room feels like a sauna. But it would all be fine and worth it if only the cannula would actually do it's job! But I can't even get the thing to stay in Lilly's tiny nose for long. When I say she has a small nose - I mean it is small. I have to clip the ends of the infant sized cannula a little shorter just to fit more comfortably in her nostrils.

Lilly sleeps on her side and she moves her head around a lot. This motion moves the cannula tubes on the sides of her face and the part under her nose just pops out. It is crucial that she sleeps on her side, so no options there. I've tried tons of tape all over her face to hold the tubes on. And I pin her arms down. But she can just move her head enough that POP! the two nostril prongs slide out and always go on top of her nose. (Not underneath where she would possibly still get some oxygen.)

I was instructed that infants should not have the cannula tubing pulled tight on their skin as it can leave permanent marks. My cousin suggested putting a hat on Lilly and then tightening the tubing some. Great idea! But sneaky Lilly managed to scoot out of the hat. I have been waking up throughout the night, grabbing my flashlight and checking the cannula placement. I pop it back in place but who knows how long it stays. At least I feel better in knowing that the last sleep study showed that Lilly only had two "respiratory events" the whole night and they only required the tiniest bit of oxygen to keep her levels at 100. So hopefully nothing terrible is happing to her because I can't keep the oxygen consistently on her.

I'm doubling my prayers that when she has the bronchoscopy done at her g-tube surgery (May 3) that whatever the obstruction that caused the two "respiratory events" will be found, easily treated, and that that will be that. No one will suggest oxygen be used while sleeping again.

Last week I saw a news article about a mom in court for withholding some parts of cancer treatment from her child. Just imagine this child had Trisomy 18. I seriously doubt the mother would be in court. I mean for Pete's sake - there are so many doctors out there that refuse to treat a child just because they have Trisomy 18. (Because after all, they are "incompatible with life.") Isn't it crazy that some people can be forced against their will to get medical treatment while others that want it are refused? What a mess this world is.

"These things I have spoken to you, that in Me you may have peace. In the world you will have tribulation; but be of good cheer, I have overcome the world.” - John 16:33

Thursday, April 14, 2011

Physical therapy evaluation

Lilly has a special new chair. It helps hold her upright. She was fascinated sitting and seeing things from a different view. This is a "special needs" baby chair that a grandma makes and sells on Ebay. It's good practice for her to sit in it, though I'm limiting her time in it until she is more used to it.

Lilly had an evaluation for physical therapy this morning. My favorite part of the service is that they come to our house! Lilly showed what she could do and then was scored. Physically she is about at a one month old's level. I would say "poor Lilly" but she doesn't know any better. Next month, a physical therapist will begin coming to the house once a week to work with Lilly. In the meantime, we are to work with her on getting her to turn her head to the left, which she doesn't care to do often.

Lilly's new oxygen machine is one noisy piece of equipment. It sounds like a super loud window air condition unit, which makes a clicking type noise every 6 seconds. Lilly gets M-A-D when I tape on the cannula and push it up her tiny nose. (I don't blame her - she already has the NG tube taking up space in there.) Taping is proving to be difficult because she already has the big piece of tape on her face holding the NG tube. I'm experimenting to see what the smallest amount of tape we can use to get by is. I guess we'll have to try big pieces tonight though because the cannula came out last night and at naptime today. Poor baby. All in all it is just frustrating me right now. It's just one more big deal thing to deal with. Wah wah wah - right? I need to be quiet and just be thankful I still have my Lilly.

[Jesus speaking] “I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.” - John 16:33

I wasn't thinking yesterday, but I assume the pulse ox will have an alarm on it, so I don't need to keep checking it once it's set. Thank you everyone that e-mailed me with suggestions.

Now I'm off to feed Lilly a little pureed avocado ...

Wednesday, April 13, 2011

Return of the oxygen

Aren't sleeping children one of the most peaceful things in the world to look at? :)

We have found a heart surgeon in South Carolina who has agreed to look at Lilly's case. He has operated on other children with Trisomy 18 with good results. Lilly's local cardiologist is sending him all her information this week. So hopefully we'll have a second opinion before too long.


Yesterday the pulmonologist called me with the complete results from Lilly's most recent sleep study. It was drastically better than the first study which we credit to keeping Lilly's weak tongue out of the way by placing her on her side to sleep. However, she still had two "respiratory events" and so needed a tiny bit of oxygen to keep her levels consistent. So the doctor prescribed oxygen for when Lilly sleeps, at the rate of 1/2 litre.

The big oxygen tank (called a "Christmas tree") and a "concentrator" and several portable tanks arrived today. We're to mainly use the concentrator and the "Christmas tree" is for backup if the electricity goes off. A cannula will be taped to Lilly's face to supply the oxygen. (Rats! I hoped we would be done with tape on the face soon! Poor baby.) I hope the cannula will be comfortable with her sleeping on her side.

Someone is supposed to come out and set up a pulse oximeter too. I'm supposed to let the doctor know if Lilly's oxygen stats fall under 90. I'm not that thrilled about the pulse ox. Every time Lilly has been hooked up to one in a hospital, it malfunctions frequently. (She has a hard time keeping the sensor on.) That's not something I want to deal with in the middle of the night.

Which leads me to a practical question for any parents reading this who have children hooked up to oxygen. Do you always use the pulse ox too? It seems sort of silly for me to use it at night because Lilly goes to bed when I do and I get her up when I get up. So unless she wakes me, I sleep! Therefore I won't be monitoring her pulse ox. It makes more sense to me that I would hook her up to it at nap time. But do I do it every time? I want to help Lilly the best I can. But I don't want machines to control our life either.

Today's oxygen delivery man noticed we had a piano. He said he played some. He tinkered a few keys as he walked by it so I asked him if he wanted to play something. He surprised me by saying "yes" and asked if I minded if he played a gospel piece. He sat right down and began playing and singing. It was great! He was really talented. We were then able to acknowledge our mutual love for Jesus and I got to tell him how much God had done for Lilly.

"For I am not ashamed of the gospel, because it is the power of God that brings salvation to everyone who believes: first to the Jew, then to the Gentile. For in the gospel the righteousness of God is revealed—a righteousness that is by faith from first to last, just as it is written: “The righteous will live by faith.” - Romans 1:16-17

Monday, April 11, 2011

Little lady Cleopatra

Weight check = 9 lbs. 13.5 oz.

This morning I got Lilly up with me as usual and found she was soaking wet. When we got downstairs into a little light I saw that her NG tube was out of her nose and wrapped around her fingers. Then I realized that she and her nightgown were completely soaked with milk!

That little sneak! She stayed quiet about what had happened all night so that she could enjoy sleeping without the tube in her nose. She told me she really didn't mind being soaked with milk since she had heard that was one of Cleopatra's beauty treatments.


The weather here today was wonderfully hot! Lilly got to wear a new outfit, curtesy of her great-aunt. The ruffle diaper cover is from this Etsy site: http://www.etsy.com/shop/kuttinup (Check out the adorable pictures of babies wearing the covers!) When my aunt told the woman that made this cover about Lilly, the woman made the matching bow for free. How kind is that?

Check out the middle picture. Lilly is finally starting to stand a lot. Her upper body is slowly getting a little stronger too. She holds her legs straight and firm now. It is a glorious achievement. :)

"Therefore, my dear brothers and sisters, stand firm. Let nothing move you. Always give yourselves fully to the work of the Lord, because you know that your labor in the Lord is not in vain." - 1 Corinthians 15:58

Sunday, April 10, 2011

Subscribe to posts option and No Problem!

My brother P. set up a subscribe option on this blog so that you can get an e-mail alert when there is a new post. If you would like to save some time checking for updates, then just sign up by providing your e-mail address. You can do so at the top right area, under "current prayer requests." Thanks P.!

Lilly went back on the additional antibiotic on Friday. She was starting to get a little cough and extra mucous again. Perhaps it was allergies but maybe something more. It made me a bit nervous, since I know she needs to stay extra healthy in order to be allowed the g-tube surgery next month. (And she needs that! She's been pulling the NG tube out of her nose much more frequently lately.) So back on the antibiotic for 10 days. She's sounding better already.

In today's picture Lilly is surrounded by handmade super soft cloth diapers. They were all generously sent by E. and J., a couple in the Bradley method birthing class that my husband and I took several years ago when I was pregnant with my son. Thank you E. that was so sweet of you! Lilly has already been getting a lot of use out of them.

"No problem!" Have you ever noticed how common this expression has become? Almost no one says "you're welcome" anymore! Say "thank you" and 9 times out of 10 you will get "no problem" in response. My husband and I have joked about this in the past, but recently when Lilly and I spent 3 days at the hospital for tests and appointments, I noticed that just about everyone responded to my "thank you" with "no problem." Why?? So pay attention to that next time you're out and about and count how many times you hear "no problem!" :)

"Trust in the LORD with all your heart, And lean not on your own understanding; In all your ways acknowledge Him, And He shall direct your paths." - Proverbs 3:5-6

Thursday, April 7, 2011

G-tube surgery date

Just got a call from the hospital. Lilly's g-tube placement surgery has been scheduled for May 3. Please please pray that she won't get sick in the meantime or they won't operate. Thank you!

Can't get him off my mind ...

Lilly has had a very calm last couple of days. She hardly napped at all on Monday and has been catching up on sleep ever since. She's continuing to sleep well through the night!

Because of that I am also being blessed to sleep through the night as I've found a way to deal with Lilly's heavy night time wetting. Since she's on continuous feed that means that she really fills up those diapers fast. I had been changing her diaper at least once a night so that she wouldn't leak everywhere. But now that problem has been solved. The trick I've found is to use a disposable in the next size up. So it holds more and combined with a diaper cover, she stays leak-free until morning. Yay! I'm still cloth diapering her during the day.

Recently I was reading the blog of another Lily with Trisomy 18. (We call her "The Other Lily" or "The Lily with one "L". To see the blog of "The Other Lily" go to: http://iseeloveblog.blogspot.com/ ) Her mama posted about a Trisomy 18 boy that is up for adoption from Russia. He is FOUR years old! And living in an orphanage. This little guy must be so strong to have survived this long. I just can't get him out of my head and wish desparately we were in a position right now to adopt him so that he would know what it feels like to be loved. (I surprised myself thinking that since just recently I basically told my older daughter that she was crazy for wanting to pray to have or adopt Trisomy 18 children when she grows up because it's so heartbreaking.) To see a picture of this little boy and to read about him go to: http://reecesrainbow.org/shaun-etkf-region-3

Please pray for Lilly's little friend Faith. She is the one that had jaw distraction surgery weeks ago. She is still in the hospital. Her jaw is now crooked and they are going to have to cut her jaw again tomorrow to try and get it straight. (I think this family deserves a refund!) One wonderful blessing though is that the initial surgery was a success in making it possible for Faith to sleep without needing extra oxygen. Faith's blog is: http://littlefaithtobigfaith.blogspot.com/

"The will of the Lord be done." - Acts 21:14

Monday, April 4, 2011

Happy 9 month birthday Lilly!!

Weight check = 9 lbs. 8 ozs.

Happy 9 months to Lilly! And happy 8 months to her little friend G.! You girls are beating the odds. Thank you God! :)

Saturday we had to go back to the hospital for Lilly to give more blood to re-do the electrolyte test. It took 3 people to get the blood they needed. Yesterday the doctor on call contacted us with the results. Lilly's potassium level was completely normal. Her sodium was slightly low. She wanted Lilly to take a salt supplement. There are no pharmacies in our town that carry what she needed. So I was very glad when her cardiologist said today that he didn't think she should take the salt supplement. He said it wouldn't hurt her to. But that it did counteract the Lasix. And that her levels are normal for someone on Lasix. So thanks, doc - that saved time in our day!

We were at the cardiologist today getting another echo done on Lilly to make sure there wasn't anything about her heart that would cause a problem in the upcoming g-tube surgery. Her cardiologist said the surgeon and anthesisologist were a bit nervous about Lilly because of her condition. But he feels confident that everything will go just fine.

As we again discussed her rejection for surgery because of her hypertrophy, he mentioned something I had not thought about. He said that a bigger pulmonary artery band could be put in, if they needed to still do a less invasive surgery at some point. But that Lilly's current band fit great and she may very well do fine with it for a couple years.

Today's echo showed that Lilly's heart function is excellent. The thickness of her heart increased by 1 mm. Dr. R had gone back and studied all her echos and said that the thickness of her heart had been there for quite awhile and was not caused by her last virus/hospitalization. So a mix of news. Dr. R was upbeat about Lilly though. He confessed that when he first met her he did not think she would live very long. But she's impressed him as a little fighter and is really beating the statistics. Our "expensive ministry" indeed!


Yesterday we went to visit Lilly's Pop in rehab. He is still recovering slowly from his stroke. He still does not speak, but can respond by nodding or shaking his head to yes or no questions. He does not walk either. He has therapy sessions each day and is really trying to do well. Sounds like Lilly got some of that fighting spirit from him! When we bring Lilly near him he reaches to touch her and looks at her so intently and smiles. I'm so glad God gave us the gift of smiles!

With all the suffering and trials in this life, I have no idea why we just keep begging God to keep our loved ones with us. With all Lilly's gone through - why don't I want her to be where there is no pain or tears? I'm selfish. Especially at times like this where she's laying in my lap and every time I look at her face she gives me a million dollar smile. What a gift she is!

"Every good gift and every perfect gift is from above, and comes down from the Father of lights, with whom there is no variation or shadow of turning." - James 1:17

Friday, April 1, 2011

One stop shopping at the hospital



Weight check: 9 lbs. 5 ozs.

Last night Lilly and I checked into the hospital for her "theraputic" sleep study. It was much more entertaining for me this time, because Lilly's tech was a real sanguine. He loved to talk and I got lots of useful information that way. And a lot of completely useless, yet very entertaining information. (He used to be a money manager for different country and rock bands such as Carlos Santana, Hank Williams Jr., Willie Nelson, etc.)

Lilly was very patient during the long hookup process. But when I laid her on her side to sleep, she started crying and I couldn't calm her for a long time. But she finally did sleep and this morning the tech told me the study went really well compared to the last one. Lilly's sleeping on her side completely changed things! The tech said that after some debate, he finally did turn on her oxygen but it was very low and he never had to turn it up to keep her SATs at 100.



Picture # 1 - pre-sleep study. # 2 - hooked up at sleep study. # 3 - end result= crazy hair!

Lilly's first appointment today was with a pediatric surgeon about g-tube placement. (This will be a tube going into her stomach for feeds. Then we can finally be done with the NG tube in her nose. Lord willing, Lilly will eventually be able eat all her food by mouth.)

Next we went to the lab for Lilly to have bloodwork done. Unfortunately her pulmonologist just called and said Lilly's electrolytes are off. Potassium too high and sodium low. There was a problem with her blood clotting so we have to go back to the hospital tomorrow to have the test redone.

Then we went to "precare" and were given instructions on how to get ready for the g-tube surgery. An anethesia doctor came in next and talk to us. He also consulted with a cardiologist anethesia doctor and they decided that the tenative date of April 12 for surgery was too soon. Lilly's infection last week made them want to push it back.

Last stop was radiology where Lilly got a stomach scan. (I'm surprised she's not glowing from all the x-rays she's had!) They needed this done before surgery. That doctor said her stomach looked great. He also did a test for acid reflux and Lilly didn't have any.

Lilly and I got home early this afternoon and scrubbed down to get all the hospital germs off and all the sleep study goop still in Lilly's hair.

"A man's steps are from the Lord; how then can man understand his way?" - Proverbs 20:24