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

Week 33 out of 39 (6 weeks to go) Hello Family and Friends, Summary: If you can believe it, they said the fluid is even less around his right lung than last week. So everything is stable. Detail: I have officially transferred care to a combination of Children's and UW Maternal Infant Care Center. So last Thursday was good timing to get a detailed ultrasound of the baby's weight and overall health and measurements. And I also completed a Fetal Echocardiogram which looked at his heart. This Monday 2/26/24 was my first appointments at UW Maternal Infant Care Center (UW MICC) and I'll be meeting with them regularly each week until I give birth so it really feels like the home stretch now. I now have a plan for each week: Every Monday I'll have 3 appointments with that team: 1 - an ultrasound looking at the points of concern with Lucas, his heart, any fluid in his body making sure it isn't getting worse and also the level of my amniotic fluid (around Lucas) 2 - Have a no...

 Week 33 out of 39 (6 weeks to go - the home stretch) Hello Family and Friends, I had a very good set of tests this morning. An echo cardiogram of Lucas' heart followed by an detailed ultrasound and met with cardiologists and obstetricians through Children's Hospital in Seattle to whom I have transferred my care to as of today. It feels surreal, I didn't sleep well last night in anticipation of this appointment, but I got good news from both tests. Summary:  Situation with the heart defects are stable, heart is strong and they expect it to stay that way from what they saw until I give birth and the fluid around the lungs has decreased to just be around the right lung (not both) so that is not only stable but decreased so that is good news. Detail:  The Heart - I talked with the cardiologist first and he had really good news. Despite the VSD and the AV Canal defect, Lucas' heart is pumping strongly. Things he has working in his favor is that even though the VSD (holes in...

 Week 31 out of 39 Hello Family and Friends,  I continue to get wonderful messages throughout the week. People reading the blog and sharing that they are thinking of us and praying. Thank you so much! I had an ultrasound yesterday and got more information! Summary: Fluid is stable around Lucas' lungs. So the situation is stable. Details: For those of you who are reading on for details, brace yourself! I don't know how much experience you have with doctors, but I hate this situation where we feel at their mercy and the doctor comes in, gives you "the news" and you have to make a decision. Sigh It's so disorienting to get what seems like definitive news from a doctor only to get another opinion or more clear details later that has you realize that the "definitive" news wasn't as definitive as you thought. Makes me feel like I should be knowing how to ask better questions in a situation where I'm out of my depth. Anyway, there are 3 doctors who are ...

30 Weeks out of 39 weeks! Hello Family and Friends,  I am happy to report that we have had an answer to prayer! Summary:  Not only is the fluid "stable" as the doctor put it, but they saw improvement. They actually measured less fluid around Lucas' lungs than last week! Details: There are actually several points to be thankful for here. I entitled this post "Answer to Prayer" because I have been highly anticipating this appointment expecting some not great news as Lucas' circumstances to be born becomes more high risk with each appointment and there were a few things that are pointed out to be doing well, if you will. An on a personal note, I have been reaching out to people for support and prayer and whatever good energy then can send our little family's way. And I walked away from this appointment feeling like it is working! His heart: so Lucas has an AV canal defect as the more major part of his heart defect and the fact that it remains "balanced...