Tuesday, September 28, 2010

Perrin Update #3

Wow! So much has happened since my last post asking for prayer for my friends, the Perrins! Chris wrote an update yesterday that pretty well sums up what's been happening. I'll post that here and then leave you with some super-sweet photos of Hayes and Bailey (I stole the captions from their mommy and daddy).

Before I do that, I'll stop for a minute and tell you that I tear up just about every single time I look at these babies. Not because I'm sad... but because it is just apparent that they are wonderfully created. Try to pay attention to their little features. Their hands and feet are what get me every time. Those tiny little fingers and toes are amazing!

Throughout the last several weeks of watching and listening from afar (we're states away from the Perrins), I have at various times felt like throwing up, singing songs of praise, and sometimes both at the exact same moment. Like I wrote last time, this is REAL LIFE, and we can't run away from it. People struggle daily, sometimes with more intense trials than others... but people struggle daily. The only hope we have is in Christ.

Chris's words:

Bailey is doing great. She's 2 lb 9 oz now (which is a full pound since birth). She's on 5 cc's of continuous feeds, which is all she can tolerate right now due to how high the perforation in her intestines was. They've upped the calorie supplements though so that she will get big enough that they can begin to feed more, and that she will be able to absorb more in the short track of intestine before you colostomy bag. Once all of this takes place, they'll be able to go back in and re-attach her intestines. She is completely over the infection that started Labor Day weekend, and is completely off antibiotics. Outlook is really good for her going forward, but she is still less than 32 weeks from gestation, and about 8 weeks from being a full term baby. She continues to need prayers as she is still about two months from going home even if all goes well.

Hayes is doing great physically, which continues to make the brain issues that much harder to swallow. He is now 2 lb 8 oz, which is more than a pound gained since birth. He is on full feeds of 20 cc, and the full load of calorie supplements, so he's growing very quickly. He's also breathing well. Two nights ago they put him on a breathing cannula (sp?), which is exactly what you see elderly people with (the tubes in the nose connected to oxygen). This is really good because it means he's breathing basically on his own. He's breathing well, eating well (through feeding tube), peeing and pooping, growing, and moving all over the place. His only issue right now is the brain issue, and if not for that, his prognosis would probably the same as sissy's.

So, more on the brain... since the news from the neurosurgeon last week, we've sought out many second opinions. Our friend who is a nursing director at the NICU at Memorial Herman (which is one of the best hospitals in the world) took Hayes' records for the medical director there to look at. He basically confirmed what the neurosurgeon said, and added that his concern was that Hayes would never be able to close off his throat and prevent food, liquid, saliva, etc. from going directly into his lungs. This would not only mean feeding tubes, but constant suctioning of saliva and mucus. It would also mean that if he gets sick and throws up, most will go into his lungs, and on top of whatever illness he has, he will also have to fight pneumonia.

We have another friend from church who passed Hayes' story onto a friend of her's who is a neonatologist at Texas Children's (which is one of the best children's hospitals in the world), and she said that based on the info she had, that Hayes would not develop much past that of a three month old. Meaning, he would behave like a baby his entire life.

Finally, Emily's family has a friend who is the medical director at the NICU at Cook's Children's Hospital in Ft. Worth (also one of the best in the world.. and he trained at Texas Children's on top of that) who was in Houston on Friday. He agreed to come to the hospital and meet with Hayes' doctor, get all the details he could, and then meet with us, and give his professional assessment, but also talk to us as someone who has followed this whole thing from the start as a friend, and who has been praying and aching for us as well. He was very helpful in that he reinforced the level of care that they've gotten at Clear Lake, and the course of treatment. He said he wouldn't have done anything differently to this point. He also started from the very beginning, and explained in detail how we've gotten to where we're at, and how we've really already defied many of the odds. Unfortunately, he also reconfirmed Hayes' outlook.

It was good to hear him explain everything in such detail, and to have someone with that level of expertise weep with us and have a deep level of care for us than just that of doctor/patient. We haven't gotten any opinions that have given us any hope in not just a positive outcome, but in any kind of "quality of life" for our son, or any kind of longevity to his life because of all the complications and medical procedures he will require.

At this point, we continue to pray for a miracle, but also pray that God will give us the wisdom and strength to face the outcome that we've been given. We've already been through so much, and I know there's nothing we can't handle, but ache for our son. We ache that he isn't going to be able to do the things that "normal' kids do, and that he probably won't survive past childhood. We're grateful for all of the insight, and grateful to have such consensus in what he's up against, but it is heartbreaking to hear about him.

We know God has a plan, and that we don't always understand it, so we just pray that God will use the lives of Hayes and Bailey to glorify Him, and to make Emily and I better parents, spouses, and people. We thank everyone again for their prayers and support, and ask you to keep it up. We cannot thank everyone enough, and cannot express enough the way you all and your prayers have lifted us up through all of this.

Thanks again,

CP and Em (and Hayes and Bailey)

Hayes - Day 45 You sure you're comfy? This is how he wanted to lay.

Bailey -Day 47--Crazy hair after snuggling with mom and oh so sleepy

Bailey - Day 48--Nap time

Hayes - Day 48 -- Almost seven weeks old. 31 weeks from the beginning.
Breathing and eating well. Need a miracle on the noggin though.

Bailey - Day 49 --Posing for her upcoming hip hop album cover... Fo shizzle

Hayes - Day 52... Hook em horns! -------- Bailey - Day 52... M-I-Z

Hayes - Day 54-- We had a staring contest. I won... Get used to it son

Romans 5:1-5 and Psalm 73:23-28 are scriptures that come to mind MULTIPLE times a day as I think about Chris, Emily, Hayes and Bailey. May these scriptures be an encouragement to you to lean fully on the Lord and hope ONLY in Him as you encounter trials of every kind. In the end, the purpose of it all is the GLORY OF GOD! There IS purpose in these trials, and it's bigger than we could imagine! Right now, He's working to cause many (thousands just through this story alone) to humble themselves and lean on Him, to hope more fully in Him alone, and to be THANKFUL even if they're crying at the same time.

I told Chris that it's the hope of every parent that their children will impact lives and change the world around them. Already, in these short 7+ weeks, the lives of Hayes and Bailey and the stories of those who are caring for them are impacting generations! As people are drawn to their knees and learn more and more what it means to hope in the Lord, literal generations will be changed. And that's just PART of the really big picture! How great is that!?! May God continue to be glorified through the Perrin family! Please continue to pray for them all!

Romans 5:1-5
Therefore, since we have been justified by faith, we have peace with God through our Lord Jesus Christ. Through him we have also obtained access by faith into this grace in which we stand, and we rejoice in hope of the glory of God. More than that, we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God's love has been poured into our hearts through the Holy Spirit who has been given to us.

Psalm 73:23-28
Nevertheless, I am continually with you; you hold my right hand.
You guide me with your counsel, and afterward you will receive me to glory.
Whom have I in heaven but you? And there is nothing on earth that I desire besides you.
My flesh and my heart may fail, but God is the strength of my heart and my portion forever.

For behold, those who are far from you shall perish; you put an end to everyone who is unfaithful to you.
But for me it is good to be near God; I have made the Lord God my refuge, that I may tell of all your works.

Saturday, September 18, 2010

Please Continue Praying for the Perrins

Hayes (left) and Bailey (right) on Day 45. Bailey is now up to 2 lbs 8 oz.

I talked to Chris tonight. Let me just say first that he and Emily seem to be thinking SO WISELY about things and are unified. The Lord is their strength, and they are understanding what it means to lean completely on Him in a totally different way than ever before. They are being changed forever as they walk through this trial.

Chris and Emily (and Emily's mom) got to meet with the doctors again this morning. According to these doctors, the outlook for little Hayes is very bleak. The neurosurgeon's estimate is that there is a 90-95% chance that he will have SEVERE developmental disabilities and a 5-10% chance that it would be anything better than the worst case. The neurosurgeon put it in perspective and told them that he only sees cases this bad 3 to 4 times a year. Considering that this doctor is on staff at a large hospital in a large city where he cares for many patients, we can see that this news is worse than horrifying.

Unfortunately, one of the doctors who has been present for some of these discussions is one of the less helpful neonatologists on the team of three that rotate through (the same doctor comes every day for a week, and then they rotate) to see the babies. It seems like so many conversations they have with physicians are complicated because of language or cultural barriers. In fact, only one of the doctors on their team speaks fluent and clear English and communicates descriptively and thoroughly. It just doesn't seem like they've got a full picture of what's really going on and what the possibilities are just yet.

Thankfully, next week one of the more helpful neonatologists on the team will be visiting the babies each day, so Chris and Emily are eager to get this doctor's perspective on what they've heard this week. Chris and Emily will also be sending a copy of Hayes' file to some doctors at another very advanced children's hospital in another city hoping to get additional information from these doctors about what they recommend as next steps for Hayes' care.

Hayes is scheduled for another ultrasound on Tuesday to see what's going on in his brain. Please join me in storming the gates of heaven with hope-filled prayers that a miracle occurs and that there is clear re-growth of brain tissue, that the fluid in his head will be replaced by healthy brain matter that is reconnecting. My thought is this: If God can redeem a people for Himself and turn wicked sinners into Christ-followers, if He can part a sea for those who are trusting Him, if He can form a man from the dust of the ground, if He can save entire nations of people from destruction... then He can most assuredly grow Hayes' brain tissue back again and fill that tiny little skull with healthy, connected tissue.

Please pray with Chris and Emily that they will have clarity, wisdom and discernment as they hear additional opinions. We are praying that there is no confusion about how to care for Hayes and that there is unity on all fronts.

Of course, we are to be praying for all things in accordance with God's will. But how in the world do we do that when it seems like there are so many complex issues involved? How do we even know exactly what to ask? This is real life, so we know we can't just pretend like it'll all just go away or that we can delay and come up with ideas some other time. It's happening now, and we can't see the big picture. Praise God that He knows the big picture and has provided His Holy Spirit and His Son who are interceding with and for us! What amazing comfort!

Romans 8:26-39
Likewise the Spirit helps us in our weakness. For we do not know what to pray for as we ought, but the Spirit himself intercedes for us with groanings too deep for words. And he who searches hearts knows what is the mind of the Spirit, because the Spirit intercedes for the saints according to the will of God. And we know that for those who love God all things work together for good, for those who are called according to his purpose. For those whom he foreknew he also predestined to be conformed to the image of his Son, in order that he might be the firstborn among many brothers. And those whom he predestined he also called, and those whom he called he also justified, and those whom he justified he also glorified.

What then shall we say to these things? If God is for us, who can be against us? He who did not spare his own Son but gave him up for us all, how will he not also with him graciously give us all things? Who shall bring any charge against God's elect? It is God who justifies. Who is to condemn? Christ Jesus is the one who died—more than that, who was raised—who is at the right hand of God, who indeed is interceding for us. Who shall separate us from the love of Christ? Shall tribulation, or distress, or persecution, or famine, or nakedness, or danger, or sword? As it is written,

“For your sake we are being killed all the day long; we are regarded as sheep to be slaughtered.”

No, in all these things we are more than conquerors through him who loved us. For I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord.

Hebrews 4:14-16

Since then we have a great high priest who has passed through the heavens, Jesus, the Son of God, let us hold fast our confession. For we do not have a high priest who is unable to sympathize with our weaknesses, but one who in every respect has been tempted as we are, yet without sin. Let us then with confidence draw near to the throne of grace, that we may receive mercy and find grace to help in time of need.

Psalm 33:20-22
Our soul waits for the Lord; he is our help and our shield.
For our heart is glad in him, because we trust in his holy name.
Let your steadfast love, O Lord, be upon us, even as we hope in you.

Romans 5:1-5
Therefore, since we have been justified by faith, we have peace with God through our Lord Jesus Christ. Through him we have also obtained access by faith into this grace in which we stand, and we rejoice in hope of the glory of God. More than that, we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God's love has been poured into our hearts through the Holy Spirit who has been given to us.

Friday, September 17, 2010

URGENT Call to Prayer... Hoping You'll Join Me

Joel 2:15-17
Blow the trumpet in Zion; consecrate a fast;
call a solemn assembly; gather the people.
Consecrate the congregation; assemble the elders;
gather the children, even nursing infants.
Let the bridegroom leave his room, and the bride her chamber.

Between the vestibule and the altar let the priests, the ministers of the Lord, weep
and say, “Spare your people, O Lord, and make not your heritage a reproach,
a byword among the nations.
Why should they say among the peoples, ‘Where is their God?’”


On August 4, two tiny little people came into this world at just 24 weeks gestation. Bailey and Hayes Perrin were born to my college friend, Chris, and his wife, Emily. They were about one-and-a-half pounds at birth and were whisked away to the NICU before Emily could even see them. They were TINY, and they were fighting for their lives. They have had many others fighting right alongside them.

Bailey --Day 2-- Hayes

Hayes --Day 4-- Bailey

Bailey and Hayes are now 44 days old, and they have gained almost 60% of their original body weight. They are receiving their mother's milk. They open their eyes. They rest easy when their mom holds them and throw fits when she has to put them down. Their daddy's hand on their back helps keep them warm and comfortable as they sleep. They have come SO FAR since that first day!

Hayes --Day 11-- Bailey

Bailey--Day 19 Hayes--Day 20

But... there have also been set-backs. For example, in Bailey's second week of life, her intestines ruptured necessitating a move to another hospital for immediate surgery. Her intestines have been by-passed while she heals. She has a colostomy bag at this point, and her intestines will be surgically reattached once she gets bigger and has healed more. A couple days later, she had to have heart surgery to repair a valve. It was several days after that second surgery that she got to join her little brother again. A while later, little Bailey's lung collapsed, and it had to be re-inflated. It seems fine now.

Bailey being held by Emily for the FIRST time--Day 21

While Bailey was healing from surgery, Emily got word that she was going to be able to hold Hayes for the first time the next day (this was about Day 11 if I remember correctly). Well, overnight, Hayes came down with an e.coli infection, and he was SICK. He puffed up with fluid and was bruising. It was so sad to see photos of his stretched out little skin and to know that Emily hadn't been able to hold him. I cried... and I'm not even his mom. I can't imagine how disappointing and heartbreaking that would be! Shortly after, the doctors learned that Hayes was not only fighting off the e. coli bacteria, but he also had meningitis. Let me just stop and say that even one of these things could have wiped him out completely... but he survived BOTH... at the SAME TIME! That, my friends, is what we call a miracle!

Hayes --Day 29-- Bailey

Due to the infections, however, there were some pretty harsh things going on in Hayes' little brain. Fluid was building up, but the worst offense was the fact that his blood pressure was so low that there was not enough oxygen going to his brain. As a result, brain tissue was damaged and died. The neurosurgeon informed Chris and Emily earlier today that Hayes has about 25% of his brain tissue remaining, which he predicts will lead to some serious developmental issues. He suggested that Hayes may not walk, talk, or even be able to sit up.

For those of us who are trusting in the One True God--the maker of heaven and earth and sustainer of all--we know that these assessments are helpful in that they tell us what we're dealing with. But we also know that this is NOT the FINAL WORD for Hayes. Only God has the final word. He can bring dead people back to life, heal the lame, give sight to the blind, and cause seizures to stop. When we look at where Hayes and Bailey were in those first pictures and see how far they've come, we recognize the Lord's hand clearly. He spoke these babies into motion, and He is the only One who knows His plan for them.

Bailey--Day 34 Hayes--Day 40

So, where does that leave US? On our faces before the LORD. Praying. Hoping. Trusting. BELIEVING. I am asking that you join me in praying for the Perrin family.

Pray for Hayes, please pray that the Lord would re-grow his brain tissue. Pray that there will be new paths between brain cells developed and that his brain can be re-mapped. Pray that he will grow to love and honor God with his whole heart, soul, mind and strength.

Pray for Bailey as well. She is just getting over an infection that doesn't seem as bad as Hayes' was, but these babies are susceptible to so many things. Pray for continued growth, that her intestine would heal well so she can start receiving more of her mom's milk, and that the re-attachment of her intestines will go smoothly when it's time for that to happen. Pray that she also will grow to love and honor God with her whole heart, soul, mind and strength.

Pray that both babies are protected from future infection, especially as we enter cold and flu season.

Pray for Chris and Emily. Pray that the Lord will uphold them and that His strength will shine right through their weakness so that others will KNOW the hope they profess and will give glory to God in heaven. Chris and Emily have a meeting with the physicians again in the morning to discuss next steps for Hayes. Emily's mom is on her way to be with them at the appointment, and Chris and Emily are spending tonight formulating questions. Please pray for wisdom, discernment, clarity and unity regarding Hayes' care.
This time is crucial!

I am asking as many people as are willing to FAST with me throughout the night tonight and the day tomorrow (or longer if you desire) and PRAY. Please join me in supporting Chris, Emily, Hayes and Bailey this way!

Hayes and Emily --Day 41-- Bailey and Chris

To motivate our prayers, I'd like to leave you with a couple passages that are so encouraging.
Pray in faith, believing that the Lord can do more than we're even asking of Him!

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

James 1:6-7
But let him ask in faith, with no doubting, for the one who doubts is like a wave of the sea that is driven and tossed by the wind. For that person must not suppose that he will receive anything from the Lord

2 Corinthians 1:3-7
Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God. For as we share abundantly in Christ's sufferings, so through Christ we share abundantly in comfort too. If we are afflicted, it is for your comfort and salvation; and if we are comforted, it is for your comfort, which you experience when you patiently endure the same sufferings that we suffer. Our hope for you is unshaken, for we know that as you share in our sufferings, you will also share in our comfort.