Loving Lucas - The Journey of Our Little Man with Down Syndrome

Dear Family and Friends, I am inspired to share some thoughts about the challenges we've faced so far with Lucas and hopefully I can also come back and remember to read this every time that I need a reminder. It's no small thing, this journey. I still remember the feeling of shock that I was pregnant again and it wasn't long after that when I received the devastating news that Lucas was positive for down syndrome. The experience continued all throughout the pregnancy, a whirl of complicated emotions depending on the test, the day, the circumstances. Feeling both positive and negative emotions and then he's here! Followed by NICU stay, then just a few weeks home, and we find ourselves in a prolonged hospital stay again. Life. Dreading what could be next... It occurs to me that there are two worlds emerging in the face of the challenges that any one of us faces. Filled with emotions both positive an negative. Hope and despair, gratitude and guilt... sometimes at the very

Dear Family and Friends, Lucas is home! It's kind of incredible. I feel like a little bit of culture shock being back in my house and knowing I can stay here. Today was day day 26 of the hospital stay. We stayed in 5 rooms, were in the ICU twice. In that whole time, I slept at home 2 of the nights (thank you Stacie for staying with Lucas one of the nights). Fernando got a solid taste of what it's like to be a single parent. He stepped up doing so much with the kids and his parents luckily are still staying with us and his mom has been instrumental keeping the house tidy and his father doing projects around the house. Fernando's parents will be heading home soon and we'll see how our household shifts into our normal. At this point Lucas has been in the hospital more than he's been home so it will be nice to discover our life of a family of 5. Fernando is taking a large amount of his paternity leave from work this summer so we'll all be home together this summer a

  Dear Family & Friends, We're looking good to get discharged. In the doctor huddle this morning to talk about his progress and the plan for this week, the cardiologist on for this week said that he'd like to see Lucas gaining weight for 3 days after he got off High Flow. So last night's weight counts as Day 1 which means that Thursday will be the day we are being discharged. This was hard for me to hear, but it IS just ONE more day than I was thinking. The nurses were able to schedule a swallow study for him tomorrow at 9am. To Get Discharged: 🗹  Move feeding tube to his stomach 🗹  Reduce his High Flow down to 2L/min 🗹 Remove High Flow completely - the plan for tomorrow ❏  Get a swallow study done - Scheduled for Wednesday 5/29 @ 9am ❏  Have 3 days off Respiratory Support where he is gaining weight each day.      🗹 Day 1 Complete - Monday     ❏ Day 2 Complete - Tuesday     ❏ Day 3 Complete - Wednesday  

 Dear Family and Friends, We're trucking along towards being discharged. They removed the High Flow air support completely today. I am looking forward to talking to the doctors tomorrow. I'm gonna see if it's possible to perhaps get discharged tomorrow and if not, really push for Wednesday. Lucas is looking great! To Get Discharged: 🗹  Move feeding tube to his stomach 🗹  Reduce his High Flow down to 2L/min 🗹 Remove High Flow completely - the plan for tomorrow ❏  Monitor for 48 hours - will want to make sure he looks good for more than 24 hours to be sure he can go home ❏  Get a swallow study done  

 Dear Family and Friends, Lucas' discharge continues to be a moving target, but we are moving towards it and he is looking really good with his breathing staying minor while we get him weaned off of the respiratory support. To Get Discharged: 🗹 Move feeding tube to his stomach 🗹 Reduce his High Flow down to 2L/min ❏ Remove High Flow completely - the plan for tomorrow ❏  Monitor for 48 hours - will want to make sure he looks good for more than 24 hours to be sure he can go home ❏  Get a swallow study done so that we know if he is aspirating or not. Aspirating means that when he is eating by mouth that a little liquid he's trying to swallow is getting into his lungs which can be an aspect of low muscle tone which is typical in children with down syndrome. He's been on a feeding tube all this time in the hospital so if we are going to start feeding him by mouth again then we'll want to know if he is aspirating. Fluid in the lungs is no bueno. If we remove the High Flow t

 Dear Family and Friends, I didn't want to overload your e-mails as we navigate Lucas' recovery. This has been such a long week and almost can't believe how long we've been here. This last week has also been much easier on Fernando and the girls as well as myself with all the support we've been getting so thank you again! This last week was mostly Lucas recovering from his ICU visit last weekend and resetting so we can move towards discharge again. I will definitely say that he looks much better overall than last week and the main concern is his breathing which definitely looks better. Maybe even better than when we were home and he was "normal". And then I have to remember that a week in the life of an infant is huge, they go through so many changes and he's a whole 2 months old now, not the super fresh little newborn he was even a month ago. I am encouraged that we have the following plan for this week to be discharged very likely on Wednesday. Yeste

  Dear Family and Friends, Today is the first step of working towards discharge again. 🗹 Today (Friday) - They moved the feeding tube from his intestines into his stomach. He's been sleeping a lot today and is doing really well. No heavier breathing!! ☺ Saturday - Let him stay status quo Sunday - Try to wean him off of the High Flow Monday-Wednesday - monitor him and make sure that he is tolerating no support, then we can go home! I was hoping to possibly go home Monday as a reasonable goal, but I spoke with one of the doctors today and they mentioned that even if we get him off air, since he had his episode of developing harder breathing after 24 hours of looking good just last week, they'll want to keep him in the hospital after he's off all support for at least a couple days to make sure he is doing well off support.  

Dear Family and Friends, Ok, we have a plan: Today, wean Lucas back down to 2L/min on the High Flow     He was bumped up to 3L/min late last night because of some slight heavier breathing so he could rest but I think it is because he's constipated so we'll also work on that today. Giving him a suppository and prune juice! Tomorrow (Friday) - move the feeding tube from intestines to stomach. If he tolerates it, great, if not, then move it back to intestines Saturday - wean him off of High Flow completely Sunday - make sure he looks really good without air Monday - come home! We have support through Sunday so if any of the above plan seems to be delayed I'll try to reach out to people on Saturday to ask for help for the upcoming week. Thank you all, we love you!

 Hello Family and Friends, Here we are on Wednesday, I'll try to summarize what all is going on for easy updates for all those checking! Respiratory Support: Lucas is on a High Flow of air at a level of 2L/min (which is the lowest setting). They let him hang out there today and not change anything. Feeding Tube: Lucas has had a feeding tube his whole life. However they needed to advance it past his stomach to have the tube deliver food directly into his intestines since he's been here. If there is food in his stomach while he's on the High Flow support then it has a chance of making him aspirate liquid into his lungs. Now that Lucas has been turned down to the lowest setting of High Flow, they feel comfortable seeing how he might tolerate moving the tube. Last Friday they moved the tube from his intestines into his stomach in preparation for being discharged to go home, however Saturday he needed more respiratory support and they turned up his High Flow so they don't

 Dear Family and Friends, Day 1 - May 20th: Monday Thank you all for joining us for another episode of "What does Lucas need to get better?". I'm your host, Christine Martincic aka Nurse Mommy. We had some excitement over the weekend, Lucas was right on the cusp of being discharged (or so we thought), when he seemed to have heavier breathing on and off on Saturday. They turned his High Flow not off, but up from 2L/min to 4L/min midmorning and by 5pm they were looking him over, turning his Flow up to 8L/min and eventually admitting him back to the ICU by the end of the day. What is the culprit of the heavy breathing? do you ask... bum bum bum - no one knows for sure! Popular guesses include: - Constipation/Gas - Moving Feeding Tube (from ND going straight into his intestines to NG into his stomach) - Aspirations (because of his low tone b/c of down syndrome he's having food go up from his stomach into his lungs) - He just needs to recover more from the virus he had and

Dear Family and Friends, Hello again! I am in a position of needing to ask for support and prayers again. What has started out as a common cold and a 5 day ICU stay to support Lucas' breathing has turned into a 2 week hospital stay and we have boomerang'd back into the ICU as of today. I'll put more details below for those interested, but basically I expected that he would be better after a week or so of hospital stay and now we are entering our 3rd week and it is clear I need to give up expectations and embrace this amazing opportunity to practice living in the present. Luckily it isn't hard to focus on holding little Lucas and bring my focus to gratitude for his little hands and feet and his soft head. I am also so humbled and grateful for those who have stepped up to help us with this current hospital stay! So, in an attempt to be organized - I shall  1. state why I called you all here 2. what we need in the upcoming week in case any of you are able and want to provi