Wow, I can’t believe Ava is already one month old! After spending nine days in the NICU, she finally came home and she has been thriving ever since. She takes a bottle very well, eating breast milk fortified with ½ teaspoon of formula for added calories. She is now 5 lb. 14 oz. (a one pound, one ounce gain since leaving the hospital) and 20.5 inches long.
Ava with her big sister, Kendall
Her stay in the hospital and the tests she received there revealed a couple of things: Ava has a small ASD, and a partially missing corpus callosum (the tissue of the brain that connects the two cerebral hemispheres). The ASD will be monitored by a cardiologist with the hopes of it closing on its own. Obviously, there is nothing we can do about her corpus callosum, but wait and see if there are any effects. Has anyone else here had experience with this type of issue in their child? I am curious to understand its implications.
This week Ava was evaluated by her physical therapist. The PT was pleased with Ava’s muscle tone and her range and frequency of movement. The PT was also encouraged by her strong sucking reflex while taking a bottle and her ability to suck on a pacifier. We are hoping and praying this ability stays strong! She also loves tummy time and can really move her head around from side to side. Right now, Ava is on par with other babies her age. We plan to take a proactive approach with physical therapy on a monthly basis until more delays require more visits.
We also visited our geneticist for the first time this week. This visit was more of a disappointment. We were reminded that although Ava looks and acts like other babies right now, this period of time will be the most “normal” she will be. While the doctor was nice, his ability to explain the results of Ava’s microarray was lacking. Previously, we had been told that Ava had additional material attached to her 4th chromosome, according to the amniocentesis. Now we learn this is probably not the case. Instead, he told us that Ava has a “severe” deletion. He suggested that my husband and I have another round of blood work done to rule out the possibility of having another child with WHS. I asked if I could have a copy of Ava’s results, but by the end of the appointment I forgot to ask again and left empty-handed. I guess I’ll have to call next week.
On a positive note, here is a video of Ava batting at the hanging toys on her play mat. My parents and I noticed her toys moving around one night while she was lying underneath, but I just thought she kicked them with her feet by accident. The following morning I watched as she hit the toys with her hand and I quickly grabbed the camera to record the exciting event …
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I think Ava is amazing and that your geneticist was wrong for putting a negative light on things. Although she is only a month, the fact that she loves tummy time, can hold up her head and is batting at toys is nothing to dismiss so easily.I will pray that she continues to develop “like typical kids”; I do know of a few WHS miracles who have reached milestones not too far off from their ‘typical’ peers. As for the report– GET IT. I am willing to bet that they are inaccurate in saying that she has a large deletion…just my gut.Lots of luck and love on this journey! Welcome, Ava!
I agree, I think Ava is doing amazing as well. It is great that she is batting at toys already. My son did not start to bat at toys or move his head until he was between 2-3 months old. I hope she contniues to do amazing things.
Ava is beautiful, adorable, and is doing so well. Just like Laurie says do not let anything the geneticist says discourage you. Those are very good signs how alert she is and batting toys already! And even if she wasn’t that’s ok too- things turn out so much better than the prognosis from the genetics community almost always. Our son Brodie didn’t even splash in the bathtub til he was almost one year old, just sat there, and couldn’t sit up until after his first birthday yet at 2 1/2 he is walking now (almost running) and a bubbly hyper toddler- he previously tested so many months behind his age at every evaluation in every category, and now he’s gaining ground and is even testing his own age in cognitive skills. So enjoy the baby days with your sweet pea, she is so adorable, and has a sweet older sister -lucky girl!! -LeeAnn
Ava is so beautiful and doing amazing things!!
Hilary
http://iwontweargrey.blogspot.com/
It really does sound like Ava is doing very, very well. It’s hard to not let the geneticist scare you, and I think especially so if you are still dealing with being just one month postpartum, when emotional reactions to everything are still so very strong. At least that was the case for me, maybe not so for everyone, I realize. I also think you are doing a great thing in being proactive with the PT. We did the same thing, and it really makes a difference. If there is a possibility of delays, why wait until they appear to start intervention? She’s a beautiful girl, and I’m thrilled to hear how well she is doing. Great video.
Thanks for the encouragement! This journey has already had its ups and downs. I think anytime anyone says something negative about your child (whether they have WHS or not) it’s a difficult thing to deal with. I know Ava will accomplish great things no matter what the geneticist says. Also, I’d love to connect with everyone on facebook, please “friend” me when you get the chance: https://www.facebook.com/carissacorson.
she is just lovely..and such a sweet big sister…xx