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The story of our precious little girl's 17 months of life with Trisomy 18 (July 4, 2010 - December 15, 2011) and of us, re-learning to live "after Lilly."
"I will praise you for I am fearfully and wonderfully made ...." Psalm 139:14

Wednesday, November 30, 2011

Article about 21 year old woman with Trisomy 18

Here is an encouraging article about a woman named Brady who has Trisomy 18 and is now 21 years old! She lives in Kansas with her family. To read article click:

http://smeharbinger.net/featured/sophomore-cares-for-sister-surviving-with-trisomy-18

Tuesday, November 29, 2011

What's next for Lilly?


It seems like for most of Lilly's life, our focus for her was to get her big enough and stable enough for the heart surgery she so badly needed. That was finally done earlier this month and she is recovering nicely.

When we walked out of the hospital with Lilly 9 days after surgery, it was such a relief! I'm a goal oriented person though, so I did find myself thinking "what do we work towards next?"

I wasn't the only one thinking that. We've had a number of people ask us what was next for Lilly. More surgeries? Therapies? What?


One misconception that I need to clear up first is that even though Lilly's heart has been repaired, it doesn't make her Trisomy 18 go away. She will always have that. It is an extra 18th chromosome in EVERY cell in her body. This means she will NEVER have a normal life expectancy. She's one of only 5-10% that has lived past 12 months.

We will always have to be careful with Lilly because she can get sick so easily. She will always have huge mental and physical challenges. She will probably never walk on her own. She may never be able to say a few "real" words. She may never feed herself and may always need the g-tube. We will always need to take care of her most basic needs.

So in the eyes of many in the world - what good was the heart surgery? It was wonderful! It gave Lilly a heart that now functions normally. She now can breath easily and that gives her more energy and she shouldn't burn calories so crazy fast. She no longer needs oxygen at night. Lord willing if/when she gets another virus, her poor heart won't start to quickly fail.

So what is next for Lilly? Well we don't honestly know. We don't currently have any surgeries planned for her. As far as we know things inside her are working pretty good right now. We'll keep up with doctors checkups.

So the big plan is just to continue to love her. To help her live each of her days to the fullest. To go as far as we can with her therapies, which she loves so much. To hold her, hug her, and give her lots of kisses. To let her touch the lives of others and share with them God's grace in her life.

Lilly is consistently the most joyful person in our household. Her smile makes our day. She is our treasure. Our gift from God. There isn't anything that any of us wouldn't do for her. And however short - or long - her life is with us, we will continue to love every minute.

"Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." - Philippians 4:6-7

Sunday, November 27, 2011

Video: Blowing raspberries

Here's a video of Lilly from last night. She was having a great time blowing raspberries!
video

Thursday, November 24, 2011

Happy Thanksgiving!

Happy Thanksgiving!

Our family marveled that we had Lilly with us for her second Thanksgiving! Thank you God!

Lilly celebrated by sleeping in until noon today. We had to wake her up - sleepyhead! Then she got to hang out with her cousins for the afternoon. My mom and I tried to take pictures of all 7 cousins lined up on a couch, but it wasn't easy as 6 are under the age of 5. Lilly was the calmest.


Last night we left Lilly off the oxygen and hooked her to the pulse ox. She only set the alarm off once and it was just for a few seconds! Yippee! I'll monitor again tonight. I'm now actually wondering if our pulse ox is off. I hooked up both my son and I to it this evening and it told us we were only at a "95." Lilly was doing even better than that part of the night. I'm wondering if the numbers are a bit off and that Lilly is at and near 100 most of the time, like at the hospital. Hmmm ... maybe Lilly was on oxygen here when she didn't need to be. She sounded so good today I didn't even give her the Lasix. Lilly is thrilled with the idea that in general she won't need that cannula in her nose at night anymore! Now that is something to be thankful for!


The kids drew their annual turkey hand (last picture). Lilly's looked a lot bigger than last year's and I was able to trace all her fingers better this year, since her fingers aren't clenched like they used to be. (To see last year's drawing - and a tiny Lilly - click here.)

"I will praise God’s name in song and glorify him with thanksgiving." - Psalm 69:30










Wednesday, November 23, 2011

Cardiologist appointment update



Height = 24.5 inches

Weight = 12 lbs. 15 oz.


Today our whole family proudly took Lilly to her first post-surgery cardiologist appointment. Dr. R, her cardiologist, ordered an echo done and was extremely pleased with the results.


Lilly's heart is functioning normally! How very very exciting to hear. :)


Her left and right ventricles are still thick, which happened in response to the holes she had in her heart. Perhaps now that the holes have been patched, and the pulmonary artery band removed, they will eventually become more normal. There is still a narrowing where the pulmonary artery band was. That should self-correct. But if not, then eventually Lilly will need a heart cath where they will insert a balloon and inflate it in that area.


Dr. R said to keep a check on Lilly with the pulse ox as he thinks she should be off the nighttime oxygen now. And once she has been off it for about a week, then we can stop giving her Lasix.


We knew things looked good when Dr. R said Lilly didn't need to come back for 4 months!


"A happy heart makes the face cheerful . . . ." - Proverbs 15:13a

Monday, November 21, 2011

Lilly plays the I'm-going-to-get-your-sugar game

In the days right before we drove to Florida for Lilly's heart surgery, Lilly began playing a game with us.

The first time it happened, my husband was holding Lilly and kissing her neck. Lilly often smiles when we "get her sugar" (kiss her neck). He would tell her he was going to "get her sugar" then kiss her neck a couple times, then lean back and look at her face. She would smile back. After a couple times, she suddenly began to turn her face to expose her neck after each time he kissed her. We marveled but weren't sure if it was really on purpose or just a coincidence.

Then the next night, I was playing with Lilly before bed and she began to do this with me. How exciting! She really was doing it on purpose! (For those that don't understand why this is so thrilling to us - it is because Lilly is very mentally and physically delayed. We have no idea what to expect from her, so when she does new things it is just so exciting.)

I was very happy when Lilly again began turning her neck yesterday, in anticipation of me getting her sugar. We're still waiting for her to remember how to laugh, since we've been home. But she remembered her sugar game!

"There is surely a future hope for you, and your hope will not be cut off." - Proverbs 23:18

Friday, November 18, 2011

Sweet talkin'


Lilly's got a "new 'do" - big sister has started pulling Lilly's hair to the side and clipping a bow around it. She calls it the "cocked to the side firework." Ha!

Lilly is finally starting to talk again some. Several times today she has talked very sweetly and softly. My son commented "she's not loud Lilly anymore." The mom of Emily, a 5 year old girl with Trisomy 18, told me that her daughter, like Lilly, seems to "forget" how to do some things whenever she is hospitalized. Things that seem to take a few weeks for them to start doing again.

We were hoping - and still hoping and praying! - that Lilly will be off the oxygen at night for good once she had her heart repaired. However, the pulse ox has shown us that if that time is coming - it is not yet. While awake Lilly's numbers are now in the upper 90s and 100. (Before they averaged the mid 90s.) However she's dropping into the upper 80s and low 90s while sleeping. Of course some of that is probably still healing up and being sore and not breathing as deep when she sleeps. So she'll have to stay on her half liter of oxygen at night for now. We'll test her again with the pulse ox in a couple weeks and see how she does.

Lilly started back with physical therapy today. Very very gentle exercises. She seemed to enjoy it but was tired by the end. Lilly's therapist used to work with recovering cardiac patients (children) so she knew what to do.

I made my first herbal infusion today with an herb called mullein. Mullein sounds perfect for Lilly - it is high in iron, magnesium, potassium, and sulfur. It's the choice herb for respiratory problems and pulmonary diseases. It calms coughing, loosens mucus and expels it. Lilly is still having coughing and choking on mucus on and off and I am excited to see if this concotion will help her. Plus she needs extra iron and potassium. (I buy herbs online from The Bulk Herb Store: http://www.bulkherbstore.com/ .) They also have a weekly email that I have learned a lot from.)

Yesterday we had a "Lilly blessing" from the middle school spirit squad at the Christian school my husband works at. A sweet card and a yummy meal. Thank you! :)

"It is more blessed to give than to receive." - Acts 20:35b

Wednesday, November 16, 2011

The cat's got Lilly's tongue

Weight check = 12 lbs. 13.5 ozs.

Lilly has been happy to be home. She often smiles at us. However, she's been very quiet! Very little talking - it's rather strange! She won't even babble for the ceiling fan. One thing I've noticed is that whenever she gets home from a hospital stay, it's like she temporarily forgets about doing some things. This time it's talking and laughing.

When I first was changing Lilly's clothes, after the hospital, she would cry. As gentle as I tried to be, it must have just hurt. Today she seemed OK with it though.

She FINALLY had a BM today (never did have one at the hospital when we were pumping all that stuff into her). It was very traumatic. Her breathing got so wacky I was starting to wonder if I needed to call 911. But she finally got that under control. It must have taken an hour to get her completely settled down.

Lilly still gets choked on stuff coming up periodically. Usually after sleeping. Being on her tummy seems to be the most comfortable for her. But overall, she's doing great.

In today's first two pictures, Lilly is sporting a pink hat made by Z.V. and M.N., two 5th graders at the school my husband works at. Wasn't that sweet? The girls did a very good job. :)

The last picture is another gift my husband brought home for Lilly yesterday. It is from S.B. - a school mom that had noticed the kind of old style of dresses that I love to dress Lilly in. It is a Polly Flinders dress about 45 or 50 years old! This is the same brand and style of the baby dresses of mine that Lilly has worn. This particular dress is a little big, but should fit Lilly just right by spring.

We continue to be amazed and so touched by the gifts that are given to Lilly and our family. More "Lilly blessings!"

As wonderful as all these earthly gifts are though, here is a promise from Jesus that is even more amazing:

"Which of you, if your son asks for bread, will give him a stone? Or if he asks for a fish, will give him a snake? If you, then, though you are evil, know how to give good gifts to your children, how much more will your Father in heaven give good gifts to those who ask him!" - Matthew 7:9-11

Monday, November 14, 2011

Home with a new improved Lilly


Lilly has been giving a lot of smiles since leaving the hospital yesterday.

Here she is smiling on our drive home today. We are so grateful that she has a patched heart. She's our new improved Lilly! Tomorrow I have to call and make an appointment for asap with Lilly's cardiologist to follow up.

Whoever put up the welcome home sign and balloons at our house - thank you! What a wonderful surprise! It made homecoming even sweeter as we carried Lilly inside. :)

Sunday, November 13, 2011

Today's To-Do List: Leave the hospital!

Little does this sleeping girl know ... but the doctors have ordered her release for today!!! We are thrilled! It is so wonderful going for days without Lilly setting off the oxygen alarm.

Little Firecracker is celebrating by wearing a ribbon in her birthday colors. (Thank you Shisshy for letting me raid your ribbon drawers each morning to choose ribbons for Lilly for the day!)

Zzzzzzzzz .... good thing there's no bugs flying around here ....

We are just in awe that the Lord has allowed Lilly to live to have her heart repaired, that we have found caring doctors to do so, and that she is thriving and we get to take her home!


"Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen." - Ephesians 3:20-21

Saturday, November 12, 2011

Goodbye cannula ... and good riddance!

Lilly has had a mostly peaceful day:

Lilly's oxygen was turned off this morning at 7:00 a.m. and she has stayed off it. Yay! No more cannula! Lilly's face and nose are rejoicing. Lilly also had her "neck jewelry" removed this morning. (The central line that went into her jugular in her neck.) With that out she was able to stop the antibiotic that she had to have with that.

We found out that yesterday's x-ray showed no change. But the doctor said that they were most interested in Lilly's oxygen numbers, which have been in the upper 90s since taking her off oxygen. Lilly will have another chest x-ray tomorrow. If it looks good Lilly could be released in a day or two.

The day Lilly had surgery, a doctor had commented on her thyroid numbers being off. We finally found out a little more about that. Yes the numbers were a little off. But nothing can really be done for another month or two, after she's recovered.

Lilly's chest scar has already healed a lot since surgery. Want to know how they closed her chest back up? GLUE!!

Lilly's big sister made her a crown to wear to celebrate when the cannula came off:

Lilly can't wait to have a bath. Her hair is exceptionally crazy!

What a relief it was for Lilly to have a better day today. She's had lots of prune juice and Karo syrup through her g-tube. Also rice cereal and bananas. It's nice to be able to feed her food again. She needs to maintain her rolls of chub! The head nurse here remembered her from last year and was so tickled with how much bigger she was and called her a "chunky monkey." It's funny how proud we are of those hard earned rolls ...

"Praise God, from Whom all blessings flow;
Praise Him, all creatures here below;
Praise Him above, ye heavenly host;
Praise Father, Son, and Holy Ghost."
(The Doxology)


Friday, November 11, 2011

Another busy day


My husband and I joke that being in the hospital can be a bit like being on vacation. We have no other responsibilities and we don't even have to change a diaper if we don't want to. And the biggest luxury of all - we have time to read! It hasn't been a vacation yesterday or today though. Lilly has kept us busy. Really though, today was a lot better than yesterday. Lilly had periods of being quiet and resting. But she still had a lot of periods of just complaining.

We still haven't heard the results of Lilly's chest x-ray today.

The first thing I did when I came in this morning was to bolus feed Lilly some molasses and water. I also made the executive decision to feed Lilly like we do at home. Continuous with breastmilk overnight and then food and water during the day. Lilly's had apples, water, and some milk today. And several doses of molasses. Still waiting for a BM but she seems much more comfortable overall. With her home regiment she goes most every day so I figure let's get her back to that. (It must sound funny to talk so much about a child's needing to have a BM - I certainly have never done it so much! - but in the Trisomy 18 world it's a big thing. Or actually anyone with low muscle tone has this problem.) If there's no results tonight I'll buy prune juice on my way in tomorrow.

Lilly had several rounds of chest percussions with the respiratory therapists. (We do it a lot too.) She also had a little occupational therapy. When I came in this morning, Lilly was looking like a big girl sitting in a special chair that the therapist brought her.

We found that Lilly was happiest today when sitting straight up. In fact, she slept very well sitting up in my lap. She was quite annoyed when disturbed for meds and checks, but was able to go back to sleep quickly.

We think Lilly is just tired of everything here and is ready to go home. Hopefully we will before long. Lilly was weaned further off oxygen today and is on the tiniest amount.

Last night my three year old son asked me if Lilly was going to die when she got out of the hospital. I said "She's getting better! I pray God will let her live a lot longer before she dies." He said "But Pop died after he left the hospital." (My father-in-law sadly passed away this summer.) I told him that most people get better in the hospital before they leave. He was happy with that. I told him that we would keep praying that Lilly would live a lot longer.

[Jesus speaking] "Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours." - Mark 11:24

Thursday, November 10, 2011

No pain no gain

Today has been, and continues to be, a rough day for Lilly. She has cried and fussed most of the day. I think the longest she slept was about 45 minutes. Two problems: she is frequently gagging and then choking on mucus, and she needs to have a BM. (They gave her a glycerin suppository but still waiting for results. I plan on bringing some molasses to the hospital with me tomorrow morning.) So gas and mucus - not a fun combination for poor Lilly.

My husband and I have spent most of the day trying to help her. Suctioning, patting, etc.

It wasn't all bad though, I did hold her for the first time since her surgery for a little while. She calmed while lying against me. (Some pepole have asked why we haven't been holding her. We couldn't when she was in PICU because of all the lines and things on her. Then until today some of her wires and tubes didn't reach far enough past her bed for us to hold her well. Plus she just hasn't liked having her head or neck moved until today.)

Late this afternoon we did a little physical therapy with her. Then Daddy played one of their special games together and she cheered up. Then I played one of our games and then got out Hank her stuffed caterpillar. Hank was the lucky one - he actually got a number of smiles. Then Lilly took a short nap. Now she's crying again and Daddy's trying to help ....

Lilly's x-ray today was encouraging - there was improvement since yesterday! (Thank you God!) A respiratory therapist came in and did a round of chest percussions. (Patting Lilly's back solidly with a little oxygen mask.) We've been doing that too though I tend to prefer using my hand. I've also been putting a folded cloth on Lilly's chest and patting her chest. I was afraid to do this but she seems to like it.

A cardiologist stopped in and said he had two orders for Lilly. First - lots of play therapy and moving to clear up her lungs. Second - leave the hospital asap to avoid catching an illness. He said that Lilly's heart looks very good. :)

As difficult as it is to listen to Lilly crying and carrying on, it probably is a really good thing. She's exercising her lungs and getting lots up and out. So she's moving towards her goal - but it's just a rough journey to get there.

"Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who love him." - James 1:12

Wednesday, November 9, 2011

"Fluffy" lungs

First picture - Lilly's new round gel pillow - I thought the name was funny - "Gel-E Donut."

Second picture - Lilly's got a sympathetic ear with Daddy.

Lilly is on such a low amount of oxygen that they tried turning it off. But her SATS dropped down and stayed in the upper 80s so they put her back on it after 30 minutes. The doctors are still hoping to wean her off it tonight or tomorrow. I know Lilly will be thrilled to get that cannula off her face.

There is a child in the next room crying for his mommy and daddy. He has been hysterical for at least an hour. It is SO hard to only be able to listen and not go pick up that child and try to calm him. I don't know how nurses do this job day after day.

Lilly had a chest x-ray this afternoon. The results weren't too great. Her lungs still look "fluffy." In fact, a little "fluffier" than yesterday. They are wondering if she is aspirating some. But overall there does not seem to be any huge worry about it at this point. Still, we are asking for specific prayers that Lilly's lungs would clear up. They are keeping up the Lasix three times a day to flush the fluid out, keeping her bed at a 45 degree angle, and suctioning. When she wakes I am trying to spend time patting her back. A nurse told me it would be OK to take a little pillow and put it on her chest and pat that to try and break up mucus.

Oh no ... now another young child is beginning to cry hysterically ... Somehow it's harder to listen to them than to Lilly. With Lilly I know we're doing everything we can to help her. It sounds like these other children are alone.
My three-year old son cried this morning when I left for the hospital. This was the first time since we've been here. We've noticed (during Lilly's other hospitalizations) that about a week is his max. Then he really needs his mamma and daddy with him.

"Comfort, comfort my people, says your God." - Isaiah 40:1

Video: Enough already!

Today has been pretty quiet so far. Except for when the nurses come in to get Lilly's vitals or turn her to her other side or change a diaper or ...

Every time it makes Miss Lilly MAD! (Thank goodness we don't have temper problems with her at home!)

Here's a little video of Lilly, calmed down after a tantrum, but still having a few grievances to share:

video

Tuesday, November 8, 2011

Fishin' in Big Bass Bay

This afternoon Lilly's potassium levels were checked and again found to be low. That's what happens with Lasix. (She has fluid on her lungs so they're using the Lasix to dry it up. Lord willing she won't be on Lasix too much longer.) They gave her potassium and then her levels were fine.

We found out that Lilly still has a heart murmer, though nothing like it was before. They think it's from the area where she had the pulmonary artery band. So that will probably go away once that area heals.

The nurse came in and took Lilly's temperature - by her ear which only takes seconds. But that was just too much and Lilly had quite a temper tantrum! I knew she wasn't in pain because she was crying with her eyes open and it was a very annoyed cry. Her brow was heavily furrowed and her eyes were darting back and forth and she kept making sure I was still listening to her list of grievances. I listened and consoled - she has a right to be tired of all this!

At 4:00 Lilly graduated from PICU and was moved to the 6th floor. She is in a section of rooms called "Big Bass Bay." Once she was settled in she stopped complaining and went to sleep.

She's resting well though seems to be breathing faster than normal. However her heart rate is good. I'm sure it's no big deal. But we sent up a couple prayers about it anyway.

All the prayers for Lilly. It amazes us! So many people we've never even met are praying. Thank you! I enjoyed reading the parable of the persistent widow yesterday and especially the beginning:

"Then Jesus told his disciples a parable to show them that they should always pray and not give up." - Luke 18:1 (To read the rest of the parable read Luke 18:1-8.)

Phone call from Lilly

This morning Lilly's siblings and I received an extra special phone call. Lilly was on the other end! She "talked" to us for a few minutes and we all talked back. That was a good sign! When she talks like that she is feeling pretty good.
Last night Lilly had a number of outbursts from pain before finally settling down to sleep.
Lilly has managed to stay off the pacemaker since yesterday so this morning, they pulled the pacing wires out of her. One side of the wires had little hooks which were hooked into her heart. But they just pulled them right out - right through her skin! She didn't care too much for that.
Lilly's potassium levels continue to be low. But that is attributed to the Lasix she is on.
The surgeon thought Lilly's early morning chest x-ray looked "a little fluffy" and wondered if it was from fluids. So the x-ray was repeated a couple hours later. That one looked good. (Lilly has been having a problem for the last few days where she suddenly begins choking on mucus so perhaps that's what it was. It's hard enough for her to get stuff out, because of her low muscle tone. And we haven't been able to really do the back and chest patting like we normally do every day to help break up stuff.) The surgeon instructed the nurses to keep Lilly's bed at a 45 degree angle.
When I got here this morning, Lilly was awake and talking to her daddy. She then greeted me. We had a little conversation before she drifted back off to sleep.

Monday, November 7, 2011

Housekeeping: Leaving comments

I've heard from quite a number of people that they have not been able to leave comments. I don't know why. I am having trouble leaving comments at some other blogspots. Must be a Google thing!

Off the pacemaker!


Lilly had a great night last night. She slept through it. They continue to wake her each morning around 5:00 a.m. for a chest x-ray. Then she went back to sleep. Dr. C, the surgeon, came to check her this morning and said she was "making progress."

Lilly's pacemaker was turned off this morning and she has not needed to go back on it. They took out her catheter and a sensor that had been on a toe monitoring her skin temperature. High flow oxygen is at 30%.

She's off the heavy duty pain medications. If she continues to stay stable, she'll be moved out of the PICU in a day or two.

Lilly just had an EKG. It really made her angry to be woken up. Actually though it was nice hearing her cry. Good for her lungs. She's got a lot of junk in her chest that periodically chokes her so we have to suction her mouth and throat out.

Busy day - now Lilly is having an Echo. She's not crying anymore but seems relaxed. The surgeon came in and watched and said her heart function looked great. There's still a narrowing where her pulmonary artery band was but he said it's nothing to be concerned about. That should heal in time. Lilly's heart remains thicker than normal - that was a result of the holes. Lord willing, that will heal over time too.
Oh yay - the nurse is now pulling some more lines out of Lilly! Still got plenty left but every one out is progress!

Sunday, November 6, 2011

Marathon nap session

Lilly has remained asleep all day, only waking for a few minutes here and there when the nurse was turning her position or changing her dressings. I hope she will just keep sleeping until morning as her daddy isn't much into all night parties.

Even in her state of sleep, Lilly periodically sneaks her fingers under the tape holding her cannula and tries to work it off.

Lilly has set off her alarms off and on this afternoon by desatting. (This means her oxygen saturation levels dropped under 89%.) Not sure if it is surgery related, a bad connection, or she's just being Lilly.

We showed a couple of the nurses here Lilly's video of her laughing that I posted last month. They both really enjoyed it and I like that it makes Lilly more "real", if that makes sense. (Seeing her smiling and interacting instead of just lying in the bed.) As an interesting aside, I heard from a couple parents of children with Trisomy 18 that their children had a laugh like Lilly's. I listened to videos of their children and was amazed! How funny that that extra chromosome can even effect laughter.

There is a man who is often here visiting a patient on this floor. We have noticed that he periodically walks around and pauses outside each patient room, closes his eyes, and prays. We were really touched by this and are grateful. We are learning so much from other people as we go through experiences with Lilly.

"Know therefore that the LORD your God is God; he is the faithful God, keeping his covenant of love to a thousand generations of those who love him and keep his commandments." - Deuteronomy 7:9

Sleep at last

Lilly had a very hard night last night. She was quite upset off and on and for a couple hours straight at one point. The nurse gave more pain killers, tried re-positioning her, and checked all her lines.
She finally settled down in the wee hours of the morning, thank God, and has mostly been sleeping well ever since. She needs it! She had major surgery and then was mostly awake for 30+ hours.
The doctors are very pleased with Lilly's progress. The floor doctor said, "Her [heart] rhythm and numbers look great. For 36 hours post-surgery she is doing very well."
Lord willing, Lilly's progress will continue.

Saturday, November 5, 2011

Cannula battles and ramblings

"Hello out there! Would someone please come get all this junk off me? I've had enough already!"


Lilly settled down quickly after her feeds were started. They're going slow - started at 5 MLs an hour and increasing by 5 every 2 hours. (Lilly's normal rate is 26.) Lilly has been resting though she was upset several times because of gas pain. When we vent her, stomach acid shoots out her g-tube. But it gives her relief.

She has been getting very very agitated over the high-flow cannula in her nose. She yanked and pulled it and one nostril began bleeding. We were able to get the respiratory therapist to bring a smaller cannula so that her nostrils weren't so stretched. That settled her for awhile but she periodically cries out and begins yanking it and we have to hold her hands down. My husband is able to sing to her to calm her down and get her back to sleep. Until the next battle. She'll let out a war cry and start grabbing at the cannula.

Lilly's on a lot of pain medication still. When she is sleeping her eyelids don't quite close and her eyes are moving back and forth and all around. Drugs seem to usually make people sleepy but it doesn't really do that to Lilly.

You can see Lilly's fist up in the air in this picture:


As I was driving to the hospital this morning I was thanking God for sparing Lilly's life through the heart surgery and bringing her to 16 months old. (And I realized that yesterday was her 16 month birthday - not the day before. I always get into a "time warp" when I travel!) Then I began thinking of the children with Trisomy 18 that I knew of that died this year. And as always, I began wondering "Why?" and "Why not Lilly?" and "Why Caleb and Lakia and Sophie and Hannah Grace and the others I read about?" The Trisomy 18 world feels so jumbled up. I imagined these sweet children all having on a little hourglass like timer and each has one a different size. God calls them all home at different times. We ALL have one of those timers. But it just seems so pronounced when you have a child that you think you're going to outlive by many years. I often think of people that lived 60 years or more ago. They didn't have that confidence that we do now that their children would most likely outlive them. We really do live in an amazing time. I am still in awe of how the heart surgery Lilly had yesterday was done.

At the hospital here, whenever a baby is born they play a portion of Brahm's Lullabye over the hospital speakers. It is so sweet and exciting and for some reason always makes me want to tear up. I always wonder "Is that baby healthy?"

Jesus loves children. In Matthew 18:10 he said: "See that you do not despise one of these little ones. For I tell you that their angels in heaven always see the face of my Father in heaven."

I have friends that desparately want to have babies yet have miscarriage after miscarriage. Or don't get pregnant at all. Sometimes when I'm grocery shopping I hear parents talk hatefully to their children. I read about people that abuse their children in horrific ways. I have people close to me that were abused terribly. I think "Why does God bless people that don't love and cherish their children with those children?" They don't deserve them. Why God, why?

Yes I'm full of "whys?" and ponderings today. It's actually rather unusual because my days are normally so busy I don't have time to think like this. Probably a good thing! But sitting here in a hospital room will do it.

Even though I don't often understand why God does the things He does, I do believe that He is sovereign in all things. And that gives me peace. I just thought of Job and how he questioned God. God's response always gives me a thrilling shiver. God answered Job out of a storm (boom! crash!):

“Who is this that obscures my plans with words without knowledge?
Brace yourself like a man; I will question you, and you shall answer me.
“Where were you when I laid the earth’s foundation? Tell me, if you understand.
Who marked off its dimensions? Surely you know! Who stretched a measuring line across it?
On what were its footings set, or who laid its cornerstone—
while the morning stars sang together and all the angels shouted for joy?"


(To read the rest of Job 38 click here)

Seems like Budweiser ran commercials in the '90s (?) which said "Why ask why?" Personally I hate the taste of beer but that slogan really sums it up. (Well, leaving out the "drink Bud Dry" part at the end anyway.) Really - "why ask why?" God's on the throne. I'm not.

"For my thoughts are not your thoughts, neither are your ways my ways,” declares the LORD."
- Isaiah 55:8

Waiting for milk video

Here's a little video of Lilly waiting for her milk. (It has now been started and she looks so much more peaceful and is starting to doze off a little.)

video

Hungry Lilly waiting impatiently

When I got the hospital this morning, Lilly greeting me with a little smile, instead of the crumpled face from yesterday. YAY!!! :)
Lilly is thrashing around this morning in a most annoyed fashion waiting for her milk. She is so hungry and thirsty! The order is in for her feeds to re-start but we are waiting for the pump. One thing we have noticed in our numerous hospital stays with Lilly - she does NOT like having her feeds cut off. So we think once she does get some food in her belly she'll finally settle down. And hopefully sleep! She has hardly slept since the surgery yesterday.
We've been trying to pacify her with some water on a sponge. It has worked for a little while. But then she yanked a monitor off her forehead. Little Firecracker means business!
Lilly was off the pacemaker for a little while yesterday evening. But they've got her back on it. Her heart spiked really high about 4:15 this morning (230+) but the doctor thought more fluids would help. And it did - her heart had returned to normal within 30 minutes. They've adjusted the pacemaker several times. Her blood pressure has been a little weird and her hands and feet colder than normal.
She had an x-ray and an echo this morning. Results were great - her heart ventricles are "pumping nicely." The surgeon and the floor doctor are both very pleased that her heart is squeezing and pumping just like it should be.
Lilly is now starting to yell but praise the Lord, the milk pump has arrived ...

Friday, November 4, 2011

Off the vent!

Lilly started bleeding this afternoon but they quickly got that under control. An hour and a half after we got word about that we were still waiting to see her and I was getting nervous. But then her anesthesiologist came in and said that it took longer because they got Lilly off the vent! We were so excited!

We finally got to see her about 5:20. She is on oxygen (60%) and a pace maker. They may start weaning off the pace maker tomorrow and see how that goes.

We were so happy to finally see Lilly and touch her little hands! She was awake and looking around.

But when she saw me her face crumpled. She started looking like she was going to cry. I had to back away so she would stop. And I thought I might start crying.

It's now almost 7:00. She is starting to make little noises. And she still is getting the sad face whenever I get near her. Maybe that will help me not to feel so sad when I leave in a little while to go back to my aunt's to see our other kids. My husband will stay with Lilly all night though. I couldn't stand if neither of us were here!

Lilly's nurse said she was so happy that Lilly could get treatment here, in spite of her Trisomy 18, and she hoped that more surgeons in the country would operate on these babies. AMEN!!

This Bible passage made me think about children with Trisomy 18 and perhaps a big reason why God makes them:

"As he [Jesus] went along, he saw a man blind from birth. His disciples asked him, 'Rabbi, who sinned, this man or his parents, that he was born blind?' 'Neither this man nor his parents sinned,' said Jesus, 'but this happened so that the works of God might be displayed in him.'" - John 9:1-3

Heart surgery a success!!

Lilly has successfully made it through heart surgery! Dr. C, the surgeon, came in at 2:30 to tell us he had finished and it went as expected. Well almost - it turned out that not only was the hole in Lilly's heart much bigger than they thought it would be - but that she had a second hole (between the upper chambers) that no one had expected. Both were patched. The pulmonary artery band was taken off and that area looked so good that no patch was required there.

Lilly had very little scar tissue from last year's operation which helped things go quickly.

She has two pace (?) wires on which should help straighten out the electrical system in her heart. Dr. C said it is not abnormal to need that after heart surgery and 95% of the time the heart will correct itself. (In the cases where it doesn't, the person has to have a pace maker put in.)

She is also still intubated. She was able to come off the ventilator after only 2 days after last year's surgery, so I think she'll do good again this time, especially considering she is so much bigger.

Lilly's post op should be over and she should be in her room in the PICU within 30 minutes. We can't wait to see her!

We went for a walk along the St. John's river, which is right by the hospital, while Lilly was in surgery. It was actually COLD outside with quite a wind. We were hoping to see dolphins like we did last year.

"Now, our God, we give you thanks, and praise your glorious name." - 1 Chronicles 29:13

Surgery has begun


Lilly was checked into the hospital by 7:45 this morning. I was given a little hospital gown to change her into - it has pink elephants and dinosaurs on it. She was weighed and her vitals taken and then we were sent to the waiting room. After we sat down an older woman came over and said how much she loved babies and asked about Lilly. After talking a few minutes she asked if she could pray for Lilly! She called her daughter over and grabbed our hands and prayed over Lilly. Another "Lilly blessing."


Soon after we were taken to another area and met Lilly's anesthesiologist for the surgery. He remembered all of us from last year and was happy to see how much Lilly had grown. In the course of our conversation he said that her labwork from Wednesday had shown an issue with her thyroid, but that it wasn't enough to postpone surgery. He said we would work on the thyroid issue after she is recovering. (I don't know what the "issue" is yet, other than something being too low.)
Lilly was taken from us a few minutes before 9:00. We got word at 11:00 that all her lines were in place and surgery had begun. I was impressed to hear that they didn't have to put a line in her head. Instead she has three - one at the top of each thigh by her groin, and one in her jugular (neck).
Surgery may be over as early as 2:30.

This last picture shows an upclose of Lilly's "fall risk" band on her leg. It seems silly she has to wear it - she certainly isn't walking! I told them she can't even roll over all the way. But it's required so we all just laughed. Lilly didn't think it was funny though - she kicked it off, along with another band, just to show us she could.

Thursday, November 3, 2011

Lilly celebrates her 16 month birthday with a trip to St. Augustine

Since Lilly's surgery was delayed until tomorrow morning (9:45!), we decided to have a family outing to St. Augustine. This city was founded in 1565 so it is a place rich with history. We had a picnic and then went into the visitor's center. There were several booths set up in there. An elderly lady was at one selling tickets for red train tours around the city. (Not a real train - more like a tram.) She asked how old Lilly was and when I told her Lilly was 16 months old today she got that shocked look like she knew something wasn't right. I told her Lilly was little because she had a genetic disorder. My older daughter chimed in with "Trisomy 18" and soon the woman knew all about Lilly and how she's in Florida to get heart surgery. She suddenly smiled and asked if we would like to ride the red train. I asked how much it cost as it looked very expensive. (The cheapest looked to be $20-something.) She said quietly that she would like us to ride for free. Before I knew it she had given us tickets and we were on our way to the red train stop.
Wow - another Lilly blessing! We took a free hour's ride around the city getting an interesting history lesson as we rode.
Lilly, and my son, fell asleep part-way through the ride:

We passed the old fort that I really wanted to go to, but we ran out of time:

This live oak tree is called "The Senator" and is about 600 years old:

One of the most photographed streets in America is Magnolia Avenue:

After we got off the red train, we realized that Sneaky Lilly had not only kicked off her sock, but it was long gone as the train had driven off:

Lilly gets to stay on her usual feeds tonight. (We do continuous feed breastmilk all night.) Then we are to cut her off at 5:45 a.m. We're to be at the hospital at 7:45 a.m. and then surgery is to begin at 9:45. We are to get updates throughout the surgery.

We are so grateful to everyone for your prayers for Lilly. We know that they are powerful because as Jesus said "Again, I tell you that if two of you on earth agree about anything you ask for, it will be done for you by my Father in heaven. For where two or three come together in my name, there am I with them." - Matthew 18:19-20

Lilly is now off to get a bath in the special antibacterial soap they told us to bathe her with tonight.