Persistent Pulmonary Hypertension

We have so many things to be thankful for! Let's start with the good stuff tonight:

• Killian is back to feeds (no longer on TPN) and up to 27 ML an hour. Sweet boy looks healthy and well fed. :)
• He weighs 11lbs 1 oz! 
• He got a big boy bed today! He has officially outgrown his original NICU bed. 
• They took the IV out his temple and mama got to wash his hair (which she said today looked very blonde).
• Grandpa Garry and Ker-Bear had a great weekend (from Kansas to Nashville and back again) with baby K! 
• KILLIAN TURNED 2 MONTHS OLD this week!! 
• He's at 42% on the vent, .23 morphine and .2 of versed (anti anxiety). 
• His heart rate is staying between 130-160 bpm and he's satting in the high 90's. 

So the not so good stuff (or opportunities to lean into the Lord as we look at them)...

• They doctors had been trying to wean Killian's nitric oxide, which is used to treat persistent pulmonary hypertension . PH in infants in very simple terms means that his lungs aren't oxygenating his blood they way they should and it's putting stress on his heart. 
• When they did an ultra sound of his heart, the PH came back worse than it was before.
• They have gone back up on his nitric since the results came back. The plan is to leave it there for a bit to give him a rest. 
• While we remain positive and faithful, it would be outright lie to say that we aren't scared and heartbroken that there has been no improvement. 
• A lot of CDH babies ultimately lose their battle because of this terrible condition.
• Tomorrow they will be doing a head ultra sound to check on the blood clots in his head.

So dear friends we ask you to please, with all your might, pray and/or send positive thoughts for our little guy, that his body would remain strong and that this battle against pulmonary hypertension be won. Please also pray/send positive thoughts for the blood clots in his head to be GONE! Continue to lift up the doctors and nurses, that they would have wisdom needed to help save our guy. Lastly, please pray that we would not grow weary in our fervent faith. 

(Proverbs 4:20-22 NKJV) My son, give attention to my words; Incline your ear to my sayings. {21} Do not let them depart from your eyes; Keep them in the midst of your heart; {22} For they are life to those who find them, And health to all their flesh.

Hugs from Florida,
Aunt Layna
Killian's Social Media Coordinator

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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.