My heart feels heavy this evening though because even now, as we're preparing (feverishly) for Killian to come home, there are families in this waiting room whose journey has just begun. We even saw a family who we met in January and they have been here since November. One family just rushed out because another member came in and said, "She just opened her eyes! She opened her eyes!" I remember that day.
My heart is also heavy watching Lindsey take care of Killian. He'll be going home on 6-7 medications, with an oxygen tank and a feeding tube. I saw her caring for him today and said to Grandma Val, "I just want it to be normal for her."
"What?" she said.
"Caring for him."
When he needs to burp, she can't just sit him up and pat his back. She has to get a syringe and suck the air that's in his belly from a feeding tube. It just little things like that I wish either of them didn't have to go through.
But alas! This is our normal now!!! And we are thankful for it.
This won't be long because I want to get back there with the family but here's what's going on:
- Killian has been just a little off the last few days and his primary and Lindsey think it's because they took him off his B6. They have printed out articles and medical research to plead their case tomorrow to get him back on it and to go home on it.
- Please pray that if that is God's will that it will happen!
- He's still great though! And Lindsey has gone nearly 15 hours caring for him with little to no help from the nursing staff.
- We're all working hard to prepare the house for his homecoming, stocking them up with supplies, cleaning, etc.
xoxox Aunt Layna
Killian has been fighting - like a champion! - for his life since he was born. Because Killian's family is so spectacular; their friends decided to create this website in their honor to help in any way possible.
We are overwhelmed by the amount of people who have asked for an avenue to help Killian, Lindsey and the family. Any donation made below will go to help pay for food while staying in the hospital, gas back and forth, travel for family and the general care Killian will be receiving beginning on the glorious day he leaves the hospital!
All donations go directly to Killian's care and the care of his family. Also, ten percent of all money collected will be donated to Cherubs, The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support.
More about CDH from CHD Support:
CDH occurs when the diaphragm fails to fully form, allowing abdominal organs into the chest cavity and preventing lung growth. CDH occurs in 1 of every 2500 births; somewhere in the world, a baby is born with CDH every 10 minutes. 50% of babies diagnosed with CDH do not survive. The cause is not known. Over a half million babies have been born with CDH since 2000. CDH is as common as Spina Bifida and Cystic Fibrosis but there is very little awareness and even less research.
Praying for baby Killian. Glad he is getting to finnaly go home. I remember being in Lindsays shoes wishing that this wasnt the new normal. Its sad that our babies and families have to go through this. Praying that God heals Killian so he can become tubeless someday soon.
ReplyDeleteKillian reminds me of my zach in sooo. Many ways, even down to the lengthy hospital stay. Cdh is a monster and takes so much from you, but Killian is doing great, God us great! Praying for you all
ReplyDeleteI have been reading along for some time, but haven't commented. I just wanted to say you have an amazing family, sister, and Killian is pretty amazing too. I wish so much for life to become more "normal" for Lindsey. It is terrible that CDH can't always be fixed so quickly. I had a baby born with CDH last summer and her stay in the hospital was much shorter and easier than Killian's has been. I don't know if that is something you want to hear, but reading Killian's story has made me so very, very thankful for our healthy little girl (who turns one year old at the end of the month). Obviously, I don't know your family personally, but from what I can glean from your writing and Facebook, I believe Killian has an unbelievably supportive and loving family that he is lucky and blessed to have been born into. He will do well at home. There is something about getting those babies out of the hospital environment that allows them to sort of blossom. All the best wishes to your family, to Killian, and mostly to Lindsey, who must be an incredibly strong woman. I'll be thinking of all of you tomorrow and pray that each day forward is better than the one before.
ReplyDeleteThank you all for the kind words! Tonya we don't mind hearing about success stories ever!! So happy that your little girl is thriving! Killian is not far behind we just know it.
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