Dec 22, 2006 Update on Lily

One more thought from Wednesday’s appointment… Lana did such a great job summarizing the good news from our GI appointment Wednesday, but there was one other thing that I wanted to share. Dr. Sanders, along with giving some rhyme and reason to the medications, also stated her belief that the reflux and heart issues are related. She doesn’t believe that the heart condition is causing the reflux, but she believes that the heart condition is causing the choking/ apnea reaction to be exaccerbated during those critical moments. The cardiologist in Houston was the only other doctor who thought that this might be the case. While this information doesn’t make the problem any better, the link does lead to the hope that, when we fix the heart problem, the reflux problem will also improve. Dr. Sanders stated that she wouldn’t be surprised if we saw a “dramatic improvement” in the reflux following open heart surgery in January. What a great day that would be!

One other item while I’m writing… Linda Fehlis, our Preschool Minister at Bannockburn, has a daughter-in-law who is on staff at TX Children’s Hospital in Houston. She was kind enough to let us know a couple of days ago that Lily’s heart surgeon was to be featured on the Discovery Channel performing an operation on a five-day-old heart patient. The program, “Surgery Saved My Life,”aired yesterday evening, and will air again on January 7 at 4PM Central Time. Lana and I watched it last night, and it was amazing to see the intricacy and expertise of that medical team. The baby featured in the show had a different condition than Lily’s but essentially underwent the same by-pass procedure. It was not easy to watch, and Lana and I both cried thinking about Lily facing the same process, but I’m glad it was on. Dr. Fraser is known around the world for what he does.

This week, I pulled out a stack of printed emails that were given to me in the midst of the last few weeks. Bob and Gayle Remlinger, some of the many faithful friends from our wonderful church, passed along some replies to their calls for prayer. These emails came from across the country and around the world. We’ve heard so many similar accounts, but it’s just an amazing picture to see the thousands of prayers for Lily surrounding the Throne of our Heavenly Father. That makes it easier to understand why Lana’s mom was right there – and wide awake – when the breathing stopped at 1AM at five days old, and I was right there – wide awake – when the breathing stopped at midnight at three months old. The God that watched over her then is watching over her now, and that knowledge is a great comfort to all of us. Thanks for the continued prayers, and Merry Christmas!

Dec 21, 2006 Update on Lily

Lily had her first appointment yesterday with a pediatric gastroenterologist and while we’re almost afraid to get excited at this point, we do feel a sense of relief at the news we were given by the doctor. Lily definitely does have reflux and it is more than likely the root cause of why she stops breathing occasionally.

The most interesting and helpful thing we learned was that we have been taking the wrong medications, as well as administering them all wrong! (This is why we kept insisting on seeing a GI specialist the last time we were in the hospital – we thought it was time to bring in the “big guns”!)

Lily has been taking Prevacid since the initial reflux diagnosis and we were told yesterday that Prevacid is not absorbed well in babies under a year of age. We had also been giving her Prilosec in the morning and at night before going to bed. We were informed that Prilosec must be given on a completely empty stomach – usually around 4 – 6 AM, and at least 20 minutes before her first bottle of the day. Otherwise, the medication is just absorbed by the acids in the stomach. So basically, we have been giving her medicine that is totally ineffective – giving her no medicine at all would have worked just as well as what we’ve been doing! Very frustrating!!!

We now have a strict plan to follow, using just two medications – Prilosec and Zantac. We’ll also be going back to the GI doctor for a follow up visit in 3 weeks. We feel like we’re finally being a little more proactive, rather than always chasing the reflux. We’ll keep you up to date on how the plan is working.
Something that we may not share enough is that despite all her health problems, Lily is a very happy baby. She smiles all the time and really tries to “talk” to all of us. She changes her voice and expressions and will totally carry on a conversation with us in her own “babyspeak”. She brings so much joy to our family.

I (Lana) cannot even begin to tell you how much it means to hear from all of you and know that you’re praying for us. We are trusting God and His plans for Lily and just taking things one day at a time. We so appreciate all of you!

Have a very Merry Christmas!

Dec 11, 2006 Update on Lily

Lily was released from the hospital around noon today. The pulmonologist reviewed the test results and mainly confirmed that there are significant breathing issues, and that they seem to be triggered by reflux. What they cannot do is prevent them from happening again. Right now, that’s a pretty frustrating diagnosis.
We are adjusting our meds some, so hopefully that helps, and they told us to brush up on our infant CPR. She will be on a heart and breathing monitor at home any time she’s sleeping or we’re not standing over her watching.

We’re focused on Romans 8:15 right now: “For you did not receive a spirit that makes you a slave again to fear, but you received the Spirit of sonship. And by him we cry, ‘Abba, Father.” We continue to cling to Him. We’re so grateful for the prayers of many, and for God’s protection.

Dec 11, 2006 Update on Lily

Lily was kept at the hospital another night as they wait for a pulmonologist to read the results of the extensive breathing test (has a big important name that I can’t remember and don’t feel like spelling). At that point, they will continue a methodical attempt to find out what is causing the choking/ apnea. I’m getting the feeling that we’re not going to know, and they are going to tell us again that it is just a rare occurance with some babies with reflux.

That may BE the answer, but it doesn’t offer much peace of mind, nor any opportunity to fix the problem.

Dec 10, 2006 Update on Lily

Things have gone relatively well leading up to January’s surgery, until Friday evening, December 8. We arrived home late from the Singing Christmas Tree performance at church. Lily had been enjoying an evening with her “Aunt Kathy” and “Cousin Kristin.” I (Ryan) sat down to feed her while I watched the Spurs game from earlier in the evening. She ate her whole bottle, and slept on my chest for about a half an hour. After that, I set her down on the ottoman in front of me and continued watching the game. When I looked down at her a moment later, it was like an “instant replay” from two months ago. She was laying there in her vomit, body bent backward at almost a right angle, not breathing. I tried the techniques we had learned to dislodge something from the throat of an infant, but to no avail. By now, Lana had called 911 and was trying to pull something out with a bulb syringe. Lily turned blue from head to toe, and I started rescue breathing on the floor until the paramedics arrived. She went from blue to an ashen grey, and then finally began responding to my breaths.

It was a nightmare, but we have never been so grateful to see a child breathe. Lana and I both confirmed aferward that we feared losing her in those moments.

We went by ambulance to Brackenridge, where they immediately began monitoring her vitals and undergoing blood tests. Since they admitted us into Children’s Hospital, they have been running several tests to find a solution to the problem.
One thing discovered in the chest x-ray was that, during her choking episode, some of her spit-up made its way into her lungs. She’s on antibiotics to prevent infection.

Doctors are guessing that it was another episode related to severe reflux, but no one is taking that for granted. We are dead-set on finding out how to prevent another event in the future, and are grateful for your prayers accordingly.

Dr. Shapiro, Dr. Wong’s partner and the Pediatric Cardiologist on call, has assured us that this is unrelated to her heart condition, and likewise will not pose a threat to that condition.

Nov 25, 2006 Update on Lily

Thanks to all of you who have been so faithful to pray for Lily Anne these past few weeks. We continue to give thanks for all that God has done in protecting our new baby girl.

To bring everyone up to date, it has been a wild ride in the first two months of Lily’s life:

9/21/06 Born 6 pounds, 14 ounces. She’s beautiful!

9/22/06 Chokes, turns blue, and is put on oxygen by the nurse.

9/24/06 Released by the pediatrician after being diagnosed with reflux.

9/26/06 In her second night at home, Lily stops breathing again, requires rescue breathing, and goes to the hospital by ambulance.

9/27/06 A barage of test reveals severe reflux (what caused the breathing problem). The tests also reveal that Lily has a large hole in her heart (Ventricular Septal Defect – aka VSD) which we are told will eventually require open heart surgery.

9/28/06 During the blood work, we are told that they discovered Lily’s platelet count is extremely low. They order a lumbar puncture to discover why. The first lumbar puntcture is unsuccessful, requiring a second go-round of this painful process. During the first procedure, they apparently nicked a blood vessel – leaving cloudy spinal fluid which brought on additional fears and tests. In the end, they discovered nothing else wrong, and the platelets came up on their own.

10/6/06 Lily finally gets to return home, now with a nighttime heart and breathing monitor.

10/18/06 After vomiting constantly for three days, Lily is re-admited to the hospital for fluids and more testing. After spending 24 hours focused on what everyone considers more reflux problems, one wonderful doctor suggests that she undergo another ultrasound. In doing so, they discover that Lily has a condition called pyloric stenosis (a thickening of the walls between the stomach and small intestine which makes it difficult for food to pass through the digestive system–as a result all the food that goes in comes back up).

10/20/06 Lily undergoes surgery to correct the pyloric stenosis. Within hours she has almost total relief from the vomiting. Following the surgery, she continues to suffer from reflux, but a condition much more managable than before, and without all the vomiting.

11/17/06 Dr. Wong, Lily’s cardiologist, does a follow-up echocardiogram . He tells us that, as expected, her heart condition is worsening, and that her left ventrical is enlarged to accommodate for the extra pressure. Lily is still less than 9 pounds, and Dr. Wong tells us that the Austin surgeons would like her at 11 puonds before they do the surgery. This is disheartening, as she is having difficulty gaining weight because of the VSD.

11/20/06 We travel to Texas Children’s Hospital in Houston to meet with the surgeon there, as well as a local cardiologist. The doctor reinforces everything we have been told by Dr. Wong. The surgeon in Houston is completely comfortable operating on Lily at her current weight, and we are told that the risks for waiting much longer to operate would be greater than any possible gains. We are scheduled for open-heart surgery in Houston with Dr. Fraser on January 23, 2007. Lily will check into the hospital on 1/22. In the meantime, Lily is on Lasix 3 times a day now – medication to help keep fluid out of her lungs – and we continue to pray diligently for her to gain strength every day to prepare for January.

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