UPDATE: 11/17/23

Luka went to be with Jesus at 10:52 pm. Thank you everyone for all of the prayers , donations and support. It has all been greatly appreciated. 

UPDATE 11/15/23

He had another episode this morning and they bagged him. Drs have said that the best option would be to pull him off , he only has a few days if that. His head has went from the 50th percentile on the 6th to the 90th now. I can tell just by looking , that his poor little head has grown so much.

We are planning a funeral , please continue to pray for us and our sweet Luka as the days , months and years ahead are going to be incredibly hard.

UPDATE 11/12/23

He had a big episode this morning and they had to bag him, that didn't work so they had to do cpr. He is back to his normal self now but we have big decisions to make tmrw. Letting his siblings and other family come to meet him. Child loss program is going to come and do some things with him as well.

UPDATE 11/10/23

Michigan agreed and said they won't do any surgery on him. We are supposed to be talking Monday to discuss plans for his care, Such as removing him from the vent or leaving him the way he is. We are completely heart broken please pray for a miracle

UPDATE 11/7/23

They found the nevus on his brain and spinal cord. He has fluid on his brain and it's from lesions and tissue that isn't functioning properly and the fluid isnt like water, its like a thick fluid. They can't do surgery, I mean they could but he would either lose one ventricle in his heart or he would lose a lung and he just can't lose either. Surgery is meant to prolong life and it would just shorten his. He is stable right now so he is lending us time to try to research and reach out to other doctors and also spend time with him but we need a miracle.

I'm so broken, I have never felt this pain before. We just need so many prayers.

UPDATE: Luka had another scope as well as CT scan today 10/27/23 of his chest. The plan to do a heart cath is still set for oct 31st. They plan to move him to Michigan where he will get either an airway Stent or airway reconstruction. He will be there for a minimum of 2-6 weeks and then get transferred back to Louisville for his cardio issues. We could use some help so we can be relieved of some bills, travel expenses, etc. so that we can go to Michigan(over 6 hours away from home) and be with our little guy. If you can help, it's greatly appreciated but prayers alone works wonders!

UPDATE: Kylan came home on Oct 1st after one month of being in the nicu. He is doing great besides alot of scary spit ups due to acid reflux.

Luka is still in the nicu on the vent. He has had some SUPER scary episodes of his heart rate dropping to the 30s and his oxygen dropping as low as 2. They have had to bag him several times to.get it back up. He is scheduled for a heart catheter and another lung scope on Oct 31st as long as all goes well. They did a culture after changing his vent tubes ans it showed e coli , so he is on antibiotics for that. We still need tons of prayers! If you can help financially it would be great(we are still trying to get caught up on bills. Our van is leaking power steering fluid so we can no longer drive it. And the tires on our car are bad and almost all have been plugged) but I really just need prayers.

I don’t even know where to start so I may ramble. As most of you know, I had my twin baby boys on Sept 1st 2023 at 33 weeks and 3 days via emergency C-section. Kylan Dean was 4lbs 7 oz and Luka Joseph Lee was 4lbs 6oz. We found out pretty early on that our sweet Luka has several heart conditions such as dextrocardia, AV canal, pulmonary stenosis, double outlet right ventricle and would need meds at birth and multiple surgeries. He also has heterotaxy syndrome where his heart is on the wrong side , backwards and we recently found out that his liver is midline and he has no spleen. At birth, they told us he had some sort of “rash”, turns out he also has a rare skin condition called congenital melanocytic nevus or “giant nevus”. We are awaiting a mri to make sure the birthmarks and/or moles haven’t grown on his brain or spinal cord and we also recently found out that he has some issues with his spine (awaiting X-ray to check all of his bones). He was placed on the vent immediately at birth, he got to try cpap for a short while before he returned back to the vent. He is still on the vent with a lot of fluid on his lungs , he has a picc line and many other things to keep his meds going(they have tried and tried for a lot of these as they have blown alot of his veins). He is now on 10ml of breast milk every 3 hours as well as TPN! We are looking at his first heart surgery happening in the next 2-3 weeks! He will then have another months down the line and years down the line. (And more if he wants to try to remove the birthmarks/moles). I feel like we are still finding out things but hopefully just good news from here.

Our Kylan is doing great! He was on high flow cannula for awhile, then switched to cpap where he then went back to high flow and is now off oxygen! He is up to 5lbs 4 oz and is getting to try bottles! He should be home in the next few weeks!!

We weren’t expecting our babies to come so early so it has kind of pushed things back. Dad is working 2 jobs , has missed a lot of time at work bc of hospital stays(I got discharged and got readmitted due to postpartum preeclampsia, that’s a whole different story) so we are just needing some help! Getting caught up on our rent and bills, travel back and forth to the nicu and then cardiac icu after heart surgery , babysitters as kids aren’t allowed at nicu , etc etc. if anyone can help, it’s greatly appreciated. If you can’t help financially , please just say a prayer for our family and the days, months and years to follow. And for all of the drs and nurses taking care of our sweet boys!