The Virginia Witmers

What's Happening and What We're Learning


8 Comments

Recently

Today, Andrew and I commented to each other that John has no idea how different he is and how much he’s been through.  Besides his size, he looks and acts like a normal baby.  He’s eating a good variety of fruits and vegetables, sleeps through the night (yipee!), makes all kinds of sounds to get our attention, smiles and laughs very easily, and loves being a part of anything we’re doing as a family.  He is altogether sweet and charming.

However, we are starting to notice a few ways that he is a little behind of other 10 month old babies.  In some of my previous posts I mentioned that he was right on track with his milestones.  That is true except, we learned this week, in the area of physical therapy.  He had an assessment and the physical therapist put him at a 7.5 month level.  He needs to get better at bearing weight on his legs so he can develop the skills and strength needed to pull up on things and eventually walk.  She’s going to come once a month to work with us and give me ideas of how to practice some exercises.  We set a goal of “cruising” (moving around a room while holding furniture) within the next 6 months. As John grows, we know we’ll see more ways that he is “behind” but we are so grateful for the many ways we see him thriving.

His weight gain has also slowed down.  I was really encouraged by how well he was doing but as he’s getting more active, his heart is working harder, and it seems like it’s more difficult for him to get ahead.  He decided to stop nursing a week or 2 ago so I’m pumping all of his feeds.  Boy oh boy has it been a struggle to get this boy breast milk through the surgeries, dairy sensitivity, mastitis, etc.!  But I am so very glad to have stuck with it.  I truly believe that it has made a difference in his health.

Next Friday, March 6, we have an appointment at UVA. Would you please pray that the cardiologists are happy with his progress over the past 3 months? Also, please pray that he would continue to grow and get stronger. Thank you!  Here are some recent photos.

I wonder where John gets those clear blue eyes?

IMG_2879

IMG_3008

IMG_3002

 


1 Comment

CHD Awareness Week

heart

February 7-14 is Congenital Heart Defect (CHD) Awareness Week.  I’m going to post some facts* to help spread awareness.  Because with awareness comes funding.  And with funding comes research. And with research comes options. And options mean hope for the future of babies born with CHDs, like our precious boy.

-CHDs are problems with the heart’s structure that are present at birth. Common examples include holes in the inside walls of the heart and narrowed or leaky valves. In more severe forms of CHDs, blood vessels or heart chambers may be missing, poorly formed, and/or in the wrong place (HLHS is one of the most severe kinds)

-1 in 100 babies are born with a CHD.  They are as common as autism and 25 times more common than Cystic Fibrosis

-CHDs are the leading cause of all infant deaths in the United States.

-There are no known causes. Only 15-20% are related to genetic conditions.

-Heart defects develop in the early weeks of pregnancy, often before a mother even knows she’s pregnant.

-There is no cure or prevention and require life-long, specialized care.

*Many of these facts were found through some online support groups I’m a part of and from the Congenital Heart Public Health Consortium.