Day 6: Lilly's broken heart

This is my sixth post in a series of seventeen.  17 days of remembering Lilly's 17 months of life as we approach her one year angelversary.

Lilly was born with two holes in her heart.  They did not close on their own as holes can often do.  This is called ventricular septal defect, or VSD. 

In explaining Lilly's heart condition to Hunter, I simply told him that "Lilly's heart was broken."  It needed to be fixed. 

Easier said than done.  To this day, I still can not believe how difficult it is to get most heart surgeons to accept a patient with Trisomy 18.  We live in North Carolina, in an area surrounded by highly respected hospitals.  But no one would accept Lilly as a patient because it is "unethical" to treat a child that was just going to die.  (Meaning since she was going to die, she shouldn't have to be put through the trauma of surgery.  Never mind that that surgery could very well extend her life ....)

Have you read in news stories about people that are forced - by the courts - to accept treatments for life threatening illnesses like cancer?  I have.  How ironic.

Thank God for Wolfson's Children's Hospital in Jacksonville, Florida.  Thank God for their love and acceptance of Lilly.  Thank God for their surgeons and the team there.

When Lilly was 3 month's old, she was too tiny and weak for the complete VSD repair surgery.  So a pulmonary artery band was placed in her heart. 

The band helped Lilly to gain weight and get stronger.  When she was 16 months old, we returned to Wolfson's for Lilly's "broken heart" to finally be fixed.  Surgery went smoothly, once again, and she healed up quickly, just as good, if not faster, than a "normal" child.

Lilly's heart was fixed and functioning normally. 

"He heals the brokenhearted and binds up their wounds." - Psalm 147:3

More details about yesterday's emergency room visit

Weight check = 13 lbs. 2 oz.

Yesterday Lilly woke up early and sounded congested and her breathing wasn't quite normal. There was a little pause between breaths at times. I spent from 5:30 - 7:30 a.m. pounding on her back and chest and suctioning her nose and wiping mucous from her mouth. It helped some and she seemed to feel better when I did that. But off and on during the morning she made wheezing sounds.

So I tried a nebulizer treatment. That didn't seem to have any effect on her. Hooked her up to the pulse ox and her numbers were OK. Wondered if Lasix would help so I gave her some of that. Then I rubbed Lympha Rub on her chest and neck and sat with her in the bathroom with the shower on hot. Results weren't good enough.

By this time I was feeling almost sick from the constant knot in my stomach. The special "Uh oh what is happening with Lilly! knot." I called my husband to tell him I was taking Lilly to the emergency room. The breathing reminded me of the two times she had viruses, both of which just about killed her.

I packed for the hospital in record time and my son and I rushed with Lilly out the door. She was actually acting normal, but her breathing was still wrong. We headed to a hospital about 40 minutes from here. The one with the children's emergency room and best-PICU-to-stay-at if you have to stay.

Once we were in the emergency room I told them I wanted a chest x-ray done on her and an RSV test. (She's on Synagis, but just in case!) The RSV test came back negative, thank God. The x-ray showed some white spots. As I said in yesterday's post, the cardiologist on call said Lilly was in early heart failure and to re-start her Lasix.

Dr. S, the emergency room doctor (who knew my husband - how great to have a connection!) said we could leave or stay - whatever I was comfortable with. Lilly was smiling and carrying on (today's picture) so I said I would like to leave. That we have a pulse ox and oxygen at home. And that we'd be back if it got worse.

Today I heard from Lilly's regular cardiologist, Dr. R. He disagreed with the other cardiologist's conclusion. (I was amused that the cardiologist on call was "Dr. C" whom I mentioned here. I wonder if he was surprised again that Lilly is still alive.) Dr. R said that her heart is completely repaired and there is no reason for heart failure. He said viral pneumonia will give the same chest x-ray findings as heart failure, but that heart failure will not cause the wheezing and congestion. Lasix won't hurt, but it may not do much. And to please take her back to the ER if her breathing got worse.

I had Lilly on the pulse ox all last night. Her numbers weren't too bad and she slept all night long and until 1:00 today when I woke her up for physical therapy. She still seems a bit congested but her breathing is pretty normal. She seems to be feeling well. Her therapist thought she seemed even more like herself that she did last Friday.

I am glad that Lilly has a pulmonologist appointment tomorrow. Maybe we can get another x-ray or even an echo done to check on things.

Never a dull moment with Lilly!

"Cast your cares on the LORD and he will sustain you; he will never let the righteous fall." - Psalm 55:22

Back home from the emergency room

Amazingly we're home from the hospital - Lilly's shortest hospital stay ever. Turned out her heart was beginning to fail. They think it was because she came off her Lasix (heart medication) too soon. So, Lilly is back taking Lasix once a day for awhile. I am SOOOO glad I took her in.

I'll post a little more detail as to what exactly happened asap. For now I need to just sit and snuggle my Lilly.

Thank you everyone for your prayers. Thank you dear God for your continued protection.

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

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. :)

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

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)

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

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

"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:

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.

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!

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.

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.)

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 ...

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