Archive for January, 2007

Jan 31, 2007 Update on Lily

// January 31st, 2007 // No Comments » // Lily Rush

We had a visit with the urologist today who confirmed that Lily does have a duplex collecting system as well as reflux in both kidneys. We began treatment with antibiotics today which will hopefully prevent her from getting any urinary tract or kidney infections. She will continue to take the antibiotics until at least her first birthday.

There is a 30-40% chance that she could outgrow the condition but the doctor didn’t feel that was very likely. It is pretty easily corrected by surgery but they will wait until she is at least a year old. They will be closely monitoring her which means some follow-up appointments as well as more ultrasounds.

Ryley and Reagan spent the day with us at the hospital. We did our schoolwork and then the girls visited the family library where they played computer games and read. Lily was very happy to see her sisters and passed the time by “talking” to them and smiling at them between naps.

Lily is quite the little show off and loves to impress the doctors and nurses by smiling, talking, and grabbing their sleeves and instruments when they try to examine her. I think they come into the room expecting to see this pitiful little sick girl and she likes to surprise them and roll over, talk to them, or hold her pacifier all by herself. Her favorite trick is to roll all around while the poor nurses try to take her blood pressure. Of course, the machine picks up nothing and we have to call the nurse back after she’s asleep. She’s developing quite a reputation and has made several friends.

Jan 31, 2007 Update on Lily

// January 31st, 2007 // No Comments » // Lily Rush

Lana and I were eating Jason’s Deli delivery in the hospital room next to Lily last night, and trying to figure out last night how many nights we’d eaten that same meal in that same position. I went back to the calendar, and figured out that Lily (who is 129 days old) has spent 34 of those days in the hospital. Lord willing, that track record will improve.

We’ve had another glitch this week. Lana mentioned yesterday that Lily had some further testing on her kidneys. They confirmed that she was born with a duplex collecting system in her left kidney (meaning that she has an extra line between her left kidney and the bladder.) They also confirmed the presence of kidney reflux – meaning that the contents of the bladder are moving back into the kidneys. The doctor told us this morning that they measure kidney reflux problems on a scale of 1 to 5 – with 1 being the slightest and 5 being the worst. He said that Lily’s condition is a level 4 or 5.

The initial treatment will include a daily dose of antibiotics to prevent urinary tract infection, and we’ll be consulting with a urologist later in the day. Another of our doctors told us that, in many cases as severe as Lily’s, they look at a surgical repair in the near future (the next 2 – 3 months.)

I’m not a doctor, but I’m going to go out on a limb and say that the fact that she has never had a urinary tract infection with this issue is a great blessing. I’m also going to assume that this surgery will be more of the pyloric stenosis variety (very minor) as opposed to the open heart variety (very major), and if it takes care of the problem, then we can work with that. As details come today, we’ll keep you posted.

From a heart standpoint, the fluid around Lily’s has improved immensely. There is still some fluid in her lungs, but it is greatly reduced. They have likewise reduced her oxygen today, and we’re hopeful that she’ll be breathing on her own in the next 24 hours.

And by the way… Lily’s smiles are back, which make everything a lot brighter! At this point, we’re not discouraged. We’re sort of numb to bad news, but we also feel confident that, if God brought us this far, He is going to carry us the rest of the way.

Jan 30, 2007 Update on Lily

// January 30th, 2007 // No Comments » // Lily Rush

Today is going well. There hasn’t been much excitement and we like it that way! Lily had a kidney function test this morning but we haven’t heard the results yet.

We met with one of the doctors today and she gave us a specific goal as far as feeding Lily goes. Cardiac kids usually weigh a little less than their peers because the simple act of feeding is like a workout for them and they get tired, dozing off before finishing bottles. They would like to see her gain some weight so our goal is a minimum of 3 ounces every 3 hours every day. And it’s more than OK if she wants to eat more.

That’s about it for today – we’ll let you know if anything else comes up. Keep those prayers coming!

Jan 29, 2007 Update on Lily

// January 29th, 2007 // No Comments » // Lily Rush

Today has been a good day. Lily is on the 15th floor now, in a regular recovery room. She’s eating well and has had 6 ounces two times today. She finally got to take a bath this evening and that always makes you feel better. She only has 2 tubes on her now – her nasal cannula and the one measuring her oxygen and heart rate, plus one IV.

Her chest x-ray and echo still show a little fluid around her heart but not as much as before so she’s making progress on that front. They are still treating her with some ibuprofen and diuretics to alleviate that problem.

The doctors made rounds today and said her ticket out of the hospital is eating well, gaining weight, good “output”, no fluid around the heart, and breathing completely on her own. We’re not expecting to get out of the hospital until the weekend.

In the meantime, the focus of this week is on recovering, as well consults with a GI doctor (to check out any continuing reflux issues), a nephrologist (to check her kidney function), and cardiologists. Her platelet levels are also being monitored. Lily will see a cadiologist several times this year, and then continue to see one at least once a year for several years.
One step closer to the finish line!

Jan 29, 2007 Update on Lily

// January 29th, 2007 // No Comments » // Lily Rush

[FROM RYAN] Lily had a good day yesterday, and an uneventful night. Lana and I took a break from the bedside for several hours, thanks to two wonderful sets of grandparents. That was one blessing of ICU – I don’t think I would have dragged Lana away if Lily had not had that level of supervision.

They tried to remove the oxygen canula from her nose yesterday afternoon, but her levels dropped to the point that it had to return. So that may be gone today or tomorrow, but the doctors are not concerned. She is eating fairly well, so they have stopped giving extra IV nutrients and removed the feeding tube from her stomach that went in three days ago.

Today, if everything goes as planned, she will probably return to a regular hospital room. PLUS side, we can have as many people in her room as we want. DOWN side, we have to share nurses like the rest of the world, and Lily has grown accustomed to top-level concierge service. Either way, we’ll be ready.

We’ll try to keep you posted if anything different happens. Thanks for the continued prayers.

Jan 28, 2007 Update on Lily

// January 28th, 2007 // No Comments » // Lily Rush

[FROM LANA] I’ve got first duty of the night shift so I’m sitting here in the ICU with Lily who is resting comfortably and sleeping sweetly. It’s fairly quiet tonight, maybe because it’s the weekend. I have Norah Jones playing softly so Lily can have something soothing to sleep by and the lights are nice and dim. (We’re trying to raise Lily on better music than “Barney’s Greatest Hits”!) Ryan is down the hall sleeping in a private conference room on a tiny little couch but I bet he’s snoring! It’s very relaxed and peaceful in our room right now.

My heart is feeling tender tonight and I have spent much time praying and writing in a journal. A while back, I did the Beth Moore “Believing God” Bible study with two close friends. There are so many flashes of it that are coming back to me right now. One of the biggest things I keep remembering is that “my God is huge and my God is able. If I don’t get what I ask Him for, I know I’ll get something bigger”. My little human mind cannot fathom what would be a bigger miracle than God just choosing to physically heal sweet Lily outright, leaving no question as to Who did it. So if He chooses to answer my fervent prayers differently, I know His answer is going to be an even bigger miracle, something I can’t even imagine. And I absolutely cannot wait to see what that miracle will be! It may not happen today, tomorrow, or even next year but I am confident that it WILL happen because God said so. “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 Christ Jesus throughout all generations, forever and ever. Amen!” (Eph. 3:20)

And one more thing I want to leave you with. A sweet friend gave Ryan and I a book before we left for Houston – Beth Moore’s “Praying God’s Word Day by Day” and here is one of the prayers from Scripture.

“The Lord will do great things for me and I will be filled with joy. I will sow in tears than I will reap with songs of joy. If I go out weeping, Lord, carrying seed to sow, I will return with songs of joy, carrying sheaves with me. (Ps. 126:3,5-6)

Please help me be willing to sow the seed of Your word and to water it with my tears, believing You in the midst of my pain. If I do, You will be faithful to fill me with joy again. You will faithfully bring a harvest forth from my life. My suffering will not be in vain.

“You, the God of all grace, who called me to Your eternal glory in Christ, will restore me and make me strong, firm, and steadfast after I have suffered a little while.” (1 Peter 5:10)

God is good all the time, even now!

Jan 27, 2007 Update on Lily

// January 27th, 2007 // No Comments » // Lily Rush

Lily has spent the day in ICU, and that has turned out to be a blessing. She has had a nurse sitting at her bedside all day catering to her every need. She went about 24 hours without sleeping for longer than 10 minutes at a time. But around 1:30PM, they gave her a small dose of morphine and she has been resting comfortably ever since.

Lily’s platelet count is over 150,000 for the first time in her life (granted, she had a transfusion of platelets two days ago, but we’ll still take it.) That means she can have a motrin dose, which is how they treat the effusion (fluid around her heart). Dr. Fraser told us that grown-ups who have had by-pass have said that an effusion feels like a heart attack, so we’re very grateful for pain killers.

We’ll try to keep you posted!

Jan 27, 2007 Update on Lily

// January 27th, 2007 // No Comments » // Lily Rush

Lily was in a lot of pain last night. They moved her back to intensive care this morning. I hesitate to try to explain what’s going on just because I don’t fully understand it myself. It seems to me that in the twenty-first century there ought to be a way to keep a baby from pain.

In a nutshell, they are watching the fluid build-up around her heart closely, and they are concerned that she’s no longer eating. There is a balance between overmedicating, which could really set back recovery, and relieving the pain. Dr. Fraser said that the reason for the pain, in his estimation, is something that would normally be treated with heavy anti-inflammatory meds. Because of Lily’s low platelet count they hestiate to treat that way.

She is being held close, and the good thing about ICU is she is being very closely monitored.

Thanks for your prayers.

Jan 26, 2007 Update on Lily

// January 26th, 2007 // No Comments » // Lily Rush

[FROM LANA – 2PM] Today has been a little more eventful than we would have chosen if anyone had asked us. Last night, Lily’s little tummy seemed to be tight and distended. The doctor suggested doing a belly film and discovered that there was quite a bit of air in her abdomen. She was given a couple of doses of Mylicon during the night to help relieve the pressure.

Lily woke up feeling miserable and just couldn’t seem to get settled and comfortable. I finally sat on the daybed in our room and laid her on my propped-up knees so we could look at each other. She quieted down and dozed off but still didn’t seem comfortable. After looking her over, the doctor felt that the pressure in her stomach could be pressing on her lungs and causing her to breathe more shallowly than she should be. The doctor decided that we needed to do something to get the air out. Unfortunately, one of the remedies was sticking a tiny tube down her nose and into her belly – never a fun procedure. The tube is still in her nose right now. They also gave her a diuretic to get rid of any excess fluids. And we’re continuing the Mylicon during the day today. These seem to be doing the trick now as she is resting comfortably and her tummy is soft again.

[FROM RYAN – 7PM] As you can probably tell, the day didn’t really go as we would have scripted. Lana and I have not had the chance to sit down and write an update. We regret not having all of you wonderful people praying. Most importantly, the heart repair seems to be doing well. A summary of the day’s events:
- As Lana said, there was a lot of discomfort through the night that led to multiple exams, x-rays, etc., and very little rest for Lily.
- To help with the abdominal pressure that Lana mentioned, they placed a tube down her nose and into her stomach to relieve the pressure.
- An echocardiogram revealed that the heart repairs have gone well, but she has fluid built up around the heart. It can be corrected with diuretics tonight and tomorrow, but the doctors told us that this could be causing much of her discomfort.
- Lily is off of morphine and receiving Tylenol with codeine, but Dr. Fraser (the heart surgeon) recommended that we move to strictly Tylenol. Even though she’s hurting, he said that the pain killers are slowing down her gastrointestinal system and causing some of the bloating.
- Lily continues to receive respiratory therapy several times a day for a partially collapsed lung.
- We have met with several other doctors today to investigate her other issues thus far through life (kidneys, pyloric stenosis, breathing, etc).

At one point this afternoon, there were literally lined up at Lily’s bedside two doctors, a nurse, and a respiratory therapist waiting on their turns to mess with her.
Please pray that God would give her comfort, and that we would not take steps backward tomorrow.

Jan 25, 2007 Update on Lily

// January 25th, 2007 // No Comments » // Lily Rush

[FROM LANA] Just a reminder to keep praising but keep praying, too. Lily is still doing wonderfully but as typical with babies that have been intubated, she is very congested. They discovered in her chest x-ray this morning that a small top portion of one of her lungs is collapsed which they assured us is very common. About 30-40% of babies who have been intubated experience this problem – so, of course, we knew the odds were good for Lily since she seems to win the “odds games” often. She is receiving respiratory treatments for the next 24 hours for sure and longer if needed. So you can pray specifically for clear lungs, no congestion and very little discomfort. We want this baby to breathe well!

[FROM RYAN] I sent Lana to the Ronald McDonald House room last night to get some much-needed rest and stood watch solo in Lily’s room. She couldn’t be picked up, and so my job was pretty much limited to comforting her and putting her pacifier back in her mouth.

It was the first time I had really been able to exhale and spend some time on extended prayers of gratitude. I was reading back through some of my own notes, and it’s always interesting to see what meant the most after the storm was over. Psalm 20 has been really important to me this week. It’s actually a prayer of David’s warriors for their king’s safety and victory, but the promises and prayers fit quite nicely with my own cries this week.

In verse one, the psalm says, “May the LORD answer you when you are in distress; may the name of the God of Jacob protect you.” During the surgery, as I kept reading this passage, I found this particular description of God to be really intriguing. It is making it clear that God’s protection was something to be sought after. But God was described here as the God of Jacob. Why Jacob? Well, the preacher in me would say it’s because Jacob represents all of Israel, God’s chosen nation, and all of his descendants. But the scared dad in me was reminded of Genesis 32, in which Jacob wrestled with God as he boldly asked for a blessing. Did God answer? Yes, but not without trial. Jacob limped away with a blessing, and a very sore hip. That’s the irony of God I’ll never understand, but can really appreciate after the storm. God’s richest blessings come only through pain. To be honest, I’m just overconfident enough that trials are the rare times I tend to desperately cry out to God. The worst and most arrogant part of human nature is that we think we are actually doing it on our own when things are going okay.

While I was studying last night, Dr Gertz, one of the pediatric cardiologists, came in and woke up a finally-sleeping-and-completely-peaceful baby with the words, “I’m so sorry, Lily, but I’m going to have to agitate you now.” And she proceeded to poke and prod and push to diagnose and treat and make a little progress. Of course, Lily began to scream and groan in her weak little drug-induced way that she has right now, and kept looking at me as if to say, “Why don’t you DO something???” She had tubes hanging everywhere at the time, and they had both of her little IV-laden arms tied to the bedrails to keep her from pulling on the life-giving lines.

I wanted badly to be able to tell her that her dad was only allowing all the pain and discomfort so that she could get stronger – that one day she could leave this place and do greater things than before. I was actually protecting her by making her vulnerable. That’s a father’s job.

And then, at 3AM, I thanked God in a whole new way for our last four months. For the first time, I really thanked Him even for allowing this to happen.
I spent the next hour searching my computer library (pastors have software with thousands of books in digital form that are easily searched – it’s one of our trade secrets) for writings on trials. I copied and pasted some of my favorites:

“When God permits His children to go through the furnace, He keeps His eye on the clock and His hand on the thermostat. His loving heart knows how much and how long.” —Warren Wiersbe

“Those who navigate little streams and shallow creeks, know but little of the God of tempests; but those who “do business in great waters” ’ these see His “wonders in the deep.” Among the huge Atlantic waves of bereavement, poverty, temptation, and reproach, we learn the power of Jehovah, because we feel the littleness of man.” —Charles Spurgeon

“There is a strange idea going around in churches today. Some Christians have the odd impression that being a believer will exempt them from all problems. Somehow they feel that, upon conversion, they’re issued the spiritual equivalent of ID cards that say, ‘This absolves the holder from any kind of pain or trouble while living on this planet.’” – David Jeremiah

“There is nothing, no circumstance, no trouble, no testing that can ever touch me until, first of all, it has come past God and past Christ, right through to me. If it has come that far, it has come with a great purpose.” —Alan Redpath

“Thou hast granted me many blessings; Now let me accept tribulation from Thy hand. Thou wilt not lay on me more than I can bear. Thou makest all things work together for good for Thy children.” —Dietrich Bonhoeffer

“Sweet are the uses of adversity,
Which, like the toad, ugly and venomous,
Wears yet a precious jewel in his head;
And this our life, exempt from public haunt,
Finds tongues in trees, books in the running brooks
Sermons in stone, and good in everything.”
—William Shakespeare

“From this side of glory we see the tapestry from underneath, and it is full of knots and twisted threads and frayed ends that lack meaning and beauty. From God’s perspective, it is all under control.” — Charles Swindoll

Lana just walked back in and said, “You can’t preach on Sunday, so you’re going to preach to them now, huh?” Maybe so. Forgive me. I just wanted to let the record show that we’re not just thankful for God making her well. We’re also thankful for God teaching us when she hasn’t been well, and we’re going to trust Him whether the future holds good things or more challenges. He’s good either way.

There have been over 5,000 visits to Lily’s page. I can’t help but imagine that there might be some who are reading these updates who have only seen God at work from afar – and who have never trusted Him personally. The greatest blessing of my life is knowing Christ, and the greatest gift I could offer you is the promise that you can know Him too.

Romans 10:9 gives us the promise, “That if you confess with your mouth, “Jesus is Lord,” and believe in your heart that God raised him from the dead, you will be saved.”

God loves you very much – He doesn’t just love the Rush family – and I pray that you can have that same fellowship today. That would be the greatest outcome of this whole trial.

Okay – now I’ll stop rambling. God is good, but He’s not just good because things went well. He’s been good all along.