Little Lucia: Perfect timing for LOVE!

As our doctor visits have slowed down, it's nice to be reassured, every 3-6 months or so, that Lucia is doing well, or heading in the right direction. Today we had a cardiology visit, a follow up from 6 months earlier. When Lucia was 1 day old, cardiologist Dr. Jane Nydam visited Lucia in the NICU and found she had high pressure in her lungs...around 80. That was the first 'marker' something was not quite right with our new baby girl. Dr. Nydam has always been very sweet, reassuring, smart, thankfully uses layman's terms, and in the end has always made us feel good. We have visited her practice about 6 times and Lucia's heart has continued to improve. Her hole has closed, her pressure has continued to go down, and some other minor defects have not changed for the worse, and shouldn't ever be a serious problem. Today, after her routine ECG/EKG, Dr. Nydam told me that Lucia's pressure in her lungs (pulminary hypertension) has elevated from a 30 (6 months ago) to a 40. This could be due to a number of reasons....it may be that she has some fluid in her lungs. The fluid may just be a simple result of Lubird being sick a couple weeks ago...no big deal. We are going to go back in 3 months this time, instead of 6, to make sure it has NOT continued to increase. Then, she also mentioned that the cause could be aspiration (swallowing food into her a lungs) or that she may need more oxygen all the time. BIG BIG sighs. I try to assume the best when I see that Lucia seems good, but there is always a part of me that is scared to hear what the doctors may see and say... the dreaded 'possible aspiration' or more oxygen... BUT for now, I need to remember that she was sick, and that could just be the issue. I pray she is back down to a 30 or even better a 25 on our next visit. I look at our precious bird and don't want to do anything but love her, in the least medically assisted way possible.
I sent out a little video of Lucia talking this week and my dad called back and left a message about how great her little video was, how 'she really wanted to say something', how she is like their beloved child-like pug, Henry (a dog could not be more spoiled or loved than Henry) and how "everything they do is the greatest". They are just here to love, and to be loved in return is all they want. We love her so much and pray our Lucia continues to improve, and grow, and allow us to love her and have her feel the love. This video is one of my favorites! She is so full of intention and truly does have something important to say!

Tomorrow night, my friends, Megan Gilbert and Kirsten Vali, are hosting a Stella & Dot Jewelry party for PKS Kids. "Lucia's Love Bunch" on Valentines week. I continue to be amazed at the love surrounding this little girl. It could NOT be better timing really, a not so perfect cardio/heart visit, followed by a Lucia Love party...and Valentine's Day-what could be better medicine for a heart!

Happy Birthday to my Dad today, February 13th. Thank you for your messages and encouragement and so much love for our Lu. Thank you to all those that are shopping for Lucia and PKS Kids with the jewelry party-going on all month here- http://www.stelladot.com/ts/wxdm5

Thank you Sebas and Javi Garces for the special Valentine card in the mail for Lucia (her first valentine!) And THANK YOU Bob and Kara for coming down on Sunday to meet our family. Kara is just about 5 months older than Lucia and also has PKS. More to come on these new friends. It was soooooo great meeting them, she is doing amazing and couldn't be cuter!