Feb 7, 2007 Update on Lily

Lily seemed to have a little bit better day today. She didn’t have as many “irritable moments” but she did continue to have lots of dirty diapers – too many! We were beginning to suspect that the antibiotic she’s taking was causing her tummy to be upset.

After dinner, I [Lana] called the cardiologist on call, hoping she would tell us to skip the antibiotic in the morning and give us something different. Instead, she told us that, based on our description of what was going on, she suspected that Lily had caught a virus during her stay in the hospital, a very common occurence, especially with long stays like we had. Not exactly what we were hoping she would say. Besides the fact that Lily has a very upset stomach, abdominal cramps are an upleasant side effect of this virus. So our poor little Lily just doesn’t feel good!

Our job now is to make sure she doesn’t become dehydrated. Otherwise, Lily will have to go back into the hospital for IV fluid treatment – not a fun prospect for anyone. The doctor felt good enough about our parenting skills to let us stay home tonight, with instructions to come straight to the hospital if we felt Lily’s condition was worsening in any way.

We made the decision to extend our apartment rental through the weekend because the doctor wants us to be nearby just in case.

We would really appreciate specific prayers – no dehydration for Lily! And no pain or tummy aches. We would just love to have a very uneventful recovery. The virus puts a little kink in things but another hospital stay would just be depressing at this point.

We’ll continue to keep you updated – hopefully, there won’t be anything exciting to report.

Feb 6, 2007 Update on Lily

For the most part, the days since we were released have been uneventful. However, Lily has been in some pain the past day and a half, and it’s possible that the fluid around her heart is still causing some irritation. It’s hard to see her hurting. Most of the time, she looks like every other happy little baby, but every so often we’re reminded that she just had open-heart surgery.

We spoke to the nurse today, and they will continue to monitor her closely and be ready to have her back if necessary. We are just a few blocks from the hospital if we need to be there quickly – that’s why they keep us in Houston.

The past two days, ironically, have afforded fewer moments for updates, as we’re trying to catch up on time with our older girls, and there are no nurses here to assist with Lily. We’ll do our best to keep you posted, and we’re still very grateful for your continued prayers!

Feb 4, 2007 Update on Lily

Just wanted to send out a quick update and let all of you know that WE ARE HOME!!! Well, not exactly home since we’re still in Houston but one step closer to home. We were released from the hospital around 3 PM this afternoon. Lily is taking five different medications and we’ve been given strict orders to keep her well. We have some follow up visits this week in Houston and if all goes well, we should be back in Austin by next week.

We’ll have a visit with her pediatrician, Dr. Jolet as well as her cardiologist, Dr. Wong when we return to Austin. While Lily will still have to “hibernate” for at least another six weeks, it will be great to be home. Lily is feeling good right now and seems to be so much more relaxed, comfortable, and content. It is such a blessing to see her breathing easy.

We are enjoying having all three of our girls together again! We’re looking forward to having some family time this week to make up for all the hospital time. We also have plans to make & deliver some Valentine treats for everyone at the hospital who took such good care of Lily. Since Lily’s birth, our appreciation for doctors, nurses, and clinical assistants has grown immensely. We will never take excellent medical care for granted!

We will continue to keep you posted on Lily’s progress. We can’t wait to share lots of good news with you as she walks along the road to recovery and makes great strides each day. Thank you for your continued prayers.

Feb 3, 2007 Update on Lily

We woke up this morning to the wonderful news that Lily will be released from the hospital some time today! Everything with the heart is looking great. We got the “debrief” from the surgeon’s nurse yesterday regarding our immediate future. We have to be in Houston at least another week in case she has any complications, and they will see her a week from today to do a follow-up EKG and echocardiogram.

Once we’re back in Austin, we were told once again that Lily has to be essentially isolated for six more weeks. Another of those SHE CANNOT GET SICK orders we’ve had before. That means Lana is in hibernation for a little while longer, but she would tell you that’s a small price to pay.

We met with the head of the urology department this morning, and he confirmed that he sees very little chance the reflux will heal on its own, and sees surgery some time in the future. He also confirmed, however, that this surgery has over a 99% success rate. We will see them again when Lily turns one to discuss the next step. So all things considered, that is a prognosis we can live with.

Those of you who have had the privilege of meeting Lily in the past might not recognize all of her newfound energy. I can’t imagine how much better she must feel. Thanks again for all your prayers, and we’ll try to strike a balance between keeping you posted and keeping you “over-posted” in the coming days. We are extremely grateful to God for restoring Lily’s heart, for bringing us through these last two weeks, for providing such a wonderful medical team all the way through this process, and for friends like you who have prayed us through.

Feb 1, 2007 Update on Lily

Thanks for all the prayers and kind words through email and this web page today. Lana’s parents spent most of the day sitting with Lily and the rest of the Rush’s made an escape for several hours. The older girls really enjoyed hanging out with mom and dad at the mall, and Lana bought two pairs of shoes (why she needs new shoes right now is beyond me, but she promises me it is “therapy.”)

For Lily’s part, she had a great day, and is looking more and more like her old self. In reality, she’s a much happier and healthier model of her old self, in that her oxygen saturation is near 100% – something we never saw until this week – and her heart rate is between 90 and 130 – numbers we never came close to. So she’s not working so hard to breath, eat, or just be awake with us. What a tremendous blessing!

The doctors told us today that, if improvement continues at this rate, Lily could be out of the hospital by this weekend. After discharge, we have to stay within close proximity of the hospital for at least another week, but it still will mean more routine living, and no more waking up four times a night for blood pressures, weighing, or medication.

Jan 31, 2007 Update on Lily

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

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

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

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

[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.

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The spiritual barriers people face are countless, but they can be categorized into Eight Primary Walls. These walls correlate with the 8 primary breakthroughs that everyone needs.
1 of 48
I have witnessed things that make me wonder if God is in control.
2 of 48
I believe the Bible has answers for today's circumstances.
3 of 48
I observe things that make me wonder if I should believe the Bible.
4 of 48
I believe God loves me in spite of who I am.
5 of 48
When bad things happen, I wonder if God can make things better.
6 of 48
When bad things happen, I feel like I am getting what I deserve.
7 of 48
When I am facing a difficult situation, I feel like I can solve problems on my own.
8 of 48
I know a lot of people, but don't feel very close to many people.
9 of 48
I worry that God is angry with me.
10 of 48
I find myself drawn to things I know are bad for me.
11 of 48
My faith practices are more about routine than relationship.
12 of 48
The possibility of gaining a good friend is worth the risk.
13 of 48
I feel compelled to make the world around me better.
14 of 48
I feel strong relationships are hard, but worth it.
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I am willing to serve others for nothing in return.
16 of 48
I find myself more focused on the things I don't have but wish I did.
17 of 48
I have to guard against judging people when I learn they are dealing with tough circumstances.
18 of 48
I have been wronged in the past in a way I cannot get over.
19 of 48
I am amazed at God's power.
20 of 48
I have a hard time trusting people.
21 of 48
People who have hurt me in the past cause me to avoid some relationships today.
22 of 48
I believe truth is the same for everyone.
23 of 48
I am so busy that I find myself ignoring the most important things in my life.
24 of 48
I am grateful for the things I have been given.
25 of 48
It humbles me to think I can know God.
26 of 48
I believe God is loving and kind.
27 of 48
I try to avoid temptations that would bring me harm.
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I believe God wants what is best for me.
29 of 48
I have too many of my own problems to deal with the problems of others.
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I spend too much of my energy pursuing material things.
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I don't believe anyone can ever know what is absolutely true.
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I look forward to good things in my future.
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It troubles me that God has not answered my prayers.
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I feel with God's help, I can face any situation.
35 of 48
When looking back on my life, I tend to focus on all of the things I did wrong.
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I worry about the problems that the future holds.
37 of 48
I question why God allowed certain things to happen in my life.
38 of 48
I tend to expect the worst to happen.
39 of 48
People would describe me as a giving person.
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I believe God is willing and able to answer my prayers.
41 of 48
I am intentionally seeking to grow in my relationships with others.
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I think that God will meet all my needs.
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I think God cares about the details of my life.
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I feel I can turn to God for direction.
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I am confident God has forgiven me for my past.
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I am willing to sacrifice immediate gratification for something better down the road.
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I feel there is a disconnect between who I really am and how I act in front of other people.
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I believe in an all-powerful, all-knowing God.
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