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The Thompson Family

Baby Luka

Scroll down to see updates as the Thompson family progresses in their CDH Journey! (All updates are written and given by parents with consent)


It’s just myself, my husband, and our children - thats all the family we have. My husband is from Russia and was adopted when he was 13. The family that adopted him couldn’t handle him so they gave him to the state, so we have absolutely NO family from his side. All I have is my mom, and I financially take care of her as she is very ill.


Upon receiving this CDH diagnosis, I was lost and felt hopeless as I learned that typically you have to go out of state to deliver at a speciality hospital. I had no idea how we were going to manage that, seeing as we have no help or support, and it’s only my husband working. All these thoughts go through my head as I’m sitting getting the results of his ultrasound alone at 15 weeks. I prayed on my way home and within the hour, a lady had reached out and said she had a house we could stay in for free that could accommodate my family, but there was currently another CDH family occupying it. We were told they should be out by Christmas. Their baby unfortunately needs a longer hospital stay, so we had to find other last minute arrangements for the month of January. So I fought and fought my insurance, my husband’s job, and the kid’s school to make the move happen.


We’re just a little, big family trying to save our baby the best we can with little to no income or resources to pay our bills back home and take care of the every day essentials.


My family and I thank you for what you’re doing to help these families and mine during this time, and I can only hope to do the same thing to help one day.


Update 1/12

I gave birth at 11 pm 1/11/23 via emergency c-section. Baby Luka is on ECMO and will be having surgery in the morning. So far he is stable. Thank you for all y’all’s help. Recovery is going to be a lot harder on me so I'll definitely need my husband around so he can’t start work right away. 


Update 2/1

Baby Luka is OFF ECMO and is doing very well on the vent! Yay!


Update 2/16

Luka was taken off the vent and put on CPAP 2/9/23 and unfortunately due to his SVT (super ventricular tachycardia) he had to be sedated to get it under control and they couldn’t sedate without compromising his breathing so they decided to intubate again on 2/13/23. Cardiology got involved and started him on some medicine and that has worked so they are weaning the vent again and hopefully by Monday they will take off the vent again. Other than that he is doing great. The 4 days we were able to hold him  for the first time and he loves cuddles, so much so that for 3 nights in a row the night nurse had to hold him her entire shift.


Update 3/2

After his 3rd failed extubation, they decided to do a bronchoscopy. They found he has severe reflux and tracheomalasia. So the plan is to take him down for surgery today and do a g-tube/Nissen procedure to see if it's the reflux causing his airway to clamp down. If this doesn’t work then a doctor will do a procedure on his airway.  


Update 3/25

Luka had his gtube placed and is doing very well on it. He did get a little infection at the site but nothing major. He has started feeds though it and is gaining weight. I am also happy to report that Luka has been extubated for 15 DAYS so far!!!!! He is doing very well off the vent and on Cpap, so much that they have even started weaning his cpap. Hopefully he continues to progress and move in the right direction.


Update 4/16

Luka has made it off all of his sedation, pain medication, and blood pressure medication with no trouble. He is doing really well in that aspect. He also made it to wall oxygen successfully, however with his laryngomalasya and tracheomalasya (floppy airway) he is on 1 liter of o2 for now. They are watching him closely to see if he needs an airway surgery for that. He is going to the OR next week 4-18-23 to close his ASD in his heart and hopefully with that he will be able to wean down on the oxygen since the extra blood won't go to his heart with his ASD being fixed. Luka is such a happy, relaxed (as much as he can be anyway) baby. All the nurses love to get him because he is low maintenance. 


Update 4/26

Luka is doing well, he just got off cpap again from his heart procedure. Slowly weaning down on oxygen and slowly going on on feeds. Slow and steady progress!


Update 5/24

Luka had his G-tube hole closed on 5-19. They did not place a new one, they want to let his stomach heal and the infection around it before they make a new hole fort a new gtube to go in. We honestly have no idea when discharge will be. They will place the new gtube on 5-29 as long as his stomach is healed. Then as long as that doesn’t have any problems it should be about a 2 week stay. However, given this is going to be his 3rd tube im not very optimistic he wont reject it as well. I will definitely keep you updated on his progress.


Update 6/22

Still moving along. They keep pushing discharge back because of weight gain, the day we were suppose to go home he started having arrhythmias again so they are adjusting his meds to see if that helps them. We’re hoping in the next few days but we will have to stick around for a few weeks after before we head home.


Update 6/30 (The Thompson Family had just received news of being accepted for additional monthly grants by ECCF)

Oh thats so amazing! Now I can stop stressing a little about bills. What ECCF is doing for CDH families is beyond words. Yes other organizations give a lump sum, but the monthly payments takes a load off of parents. ECCF provides a little safety net has saved my family over the months and for that we are so thankful!


Update 7/30

Good evening. I’ve been waiting to update because knowing luka i didn’t want to jinx anything. What a month it has been. Luka finally has a healed Gtube, and so far so good (fingers crossed) we got discharged and had our follow up appt but was advised to hang around for a few weeks just to make sure because well, luka is luka as we like to say. We’re hoping to be home within a week or so. I will send pictures as soon as i get them on my iPad off my phone. Thank you all for everything.

The Thompson Family
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