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 48--Nap time
Hayes - Day 48 -- Almost seven weeks old. 31 weeks from the beginning.
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
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.
1 comment:
thanks for the updates. i will continue to pray often for this family that i've never met! i love these babies; so sweet, so tiny! they're like little kittens! i wish i could see and pray over them in 'real life.'
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