Stable - Week 31
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 working out of the Maternal Fetal Medicine Office at Valley Medical and I finally talked with Dr. Cheng, the 3rd doctor, over the phone after the ultrasound. She was able to clarify that she actually has a robust amount of experience specifically in Down Syndrome. So last week I met with Dr. McKinnon and the week before when the fluid looked potentially dangerous. Dr. McKinnon I thought was very clear in saying that she was conferring with the cardiologists out of Children's that they all agreed that the fluid was the result of Lucas' heart defects.
After talking with Dr. Cheng, she brought her perspective into the situation that in her experience it is very typical for babies with down syndrome to have extra fluid in their bodies for various reasons. One is that they have an "immature lymphatic systems" they systems will drain extra fluid from around the body, filter it for pathogens and deposit the fluid back into the circulatory system. So in her opinion, she thinks it is more likely that the fluid we see around his lungs (which is a common location to see extra fluid if the lymphatic system is immature) is more likely due to the lymphatic system, not the heart defects.
So, the fact that the fluid is stable means that the lymphatic system is doing it's job which is GREAT news! And makes a little more sense that it could improve.
A lot of people have made comments about how Lucas is a fighter and it brings tears of joy to my eyes. He is a little fighter, he's doing so well so far despite all these concerns.
If I was to summarize where we are at now, I will continue to be monitored every week, but my care is being transferred to Maternal Fetal Medicine out of Children's Hospital over in Montlake. Dr. Cheng is on a team up there which makes me feel great! :) There are a lot of dangers on the horizon, and a lot of pieces to Lucas' puzzle, but as long as we continue to see green flags each week I am monitored the doctors and I are in agreement that I should carry him to term as long as possible which would be 39 weeks.
Here are the issues that are common in down syndrome that Lucas is strong against so far:
Heart Defect - the fact that it is balanced is working in his favor. As long as that continues to be balanced that's a green flag.
Lymphatic System/Fluid - as long as the fluid doesn't increase around the body too much and specifically does not increase around the lungs that is a green flag.
Anemia - Dr. Cheng mentioned that she is concerned that they could see signs of anemia which would indicate a blood issue that could be serious that presents itself around this time of the pregnancy. They can look at the quality of blood flow of a blood vessel in the brain that has looked good the last 2 weeks. So as long as that looks good for the next couple weeks, we can consider that a green flag.
Christine, you are a great communicator about Lucas.It is superb to hear you are now under the docs at Children’s, no where better. And what a good mom you are. Blessings, prayer, love sent to you all.
ReplyDeleteYou have done an incredible job of interpreting and summarizing the plethora of information you get each week. It’s relieving to hear more positive outcomes. We look forward to meeting this champion.
ReplyDeleteI'm glad you found a down syndrome maternal med specialist that knows her stuff. Not all doctors know it all, and I've learned that myself in the past few years. Once, Leilana was sick and she was getting blue in the lips and extremities so we called the nurse line and they were panicking and told us to get to the ER immediately. Shane took her in and they ran some really evasive tests for a 2 year old (at the time) but were still super concerned and sent them to Children's. When they got to Children's they weren't concerned at all and said that is common for babies and toddlers when they get sick, and it actually isn't anything at all. Relief for us, but big hospital bills later for what turned out to be nothing... ugh.
ReplyDeleteAlso, more recently Tali has a very flat head on the back right due to torticollis from being breech and her head stuck facing right in the womb. We had been talking with our ped about the potential for a helmet to help her head shape. Our ped thought it was very mild and not worth the fuss of a helmet and recommended we see a specialist prosthetic doctor just to see what they say. Took a month to get that appointment and the prosthetic doctor, was like OMG Tali's head shape is in the severe category and we should have looked into a helmet a couple months ago! So here we are in a scramble to get it going before her skull fuses too much. She gets the helmet this Friday at 5.5 months.
Anyways, morale of the story, seek out specialists in the area of medicine of yours or your kids' issues to avoid extra cost and fight for the best care, do your own research, etc. to ensure you get the best care out there! Stay strong mama, we are all here for you and the fam!
Will keep praying and so thankful you found some great medical partners and gaining clarity on Lucas's health. Sending hugs!
ReplyDeleteThanks for the comments everyone! And that's incredible, Jen, just amazing what we have to navigate with our little kiddos!
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