Henry is four months!

Henry is four months old and quite the active little man!! He's is perfecting the art of conversation, "Henry speak" of course, and he is so fun to talk to. He gives us the full report when each of us returns home from work on the "accomplishments" of the day- usually with a smile that makes a hard day disappear. His language is full of Ooo's and Aaa's with many smiles and hand gestures. He has identified several toys that seem to be favorites that we (not so creatively) named "Mr. Cow" and "Mr. Giraffe" that accompany him most places he goes now. He can grasp them and likes to look at them and bite them occasionally (they are very forgiving:). Julie has acclimated to staying at home with Henry like a pro and has been continuing to work on all of Henry's daytime favs- tummy time, music, books, etc. We look forward to the night shifts being over with in May as it makes for a tired (but super tough) mommy on Monday mornings.

Henry has had some setbacks this past month as he began to struggle with eating, lost some weight and has had some low O2 SATs on several occasions. We tried many different approaches and didn't have success at relieving what seemed to be very painful for him while eating. Upon suggestion of Henry's dietitian we requested medication for reflux for him from the pediatrician and that seems to help him a little..... though we're still problem solving. His heart defect makes eating pretty fatiguing for him, so we also try to be mindful of his energy. We're thankful for Henry's "team" of specialists that come to our home to work with him including our Occupational Therapist (Sherri), our Dietitian (Dana) and our visiting nurse (Charlotte). We were able to address this road bump quicker with the suggestion and encouragement of these folks and they are helping us provide the care Henry needs. We have a Cardiologist appointment Monday to look again at Henry's heart via Echo cardiogram and likely discuss Henry's cardiac cath date. Hopefully our doctor will have insight regarding his eating problems and how we might continue to ease barriers to his growth as much as possible.

We attended Henry's genetics appointment in the beginning of March and met with the same geneticist we had during our pregnancy. She did not have any new news, and reiterated that Henry's main hurdle right now in light of his DiGeorge Syndrome was his heart defect. A genetics physician completed an assessment with Henry and reaffirmed he appeared unaffected so far by his syndrome other than his heart problems. We discussed future support should Henry struggle with speech, learning and/or development and they offered guidance and support in the future.

Julie took Henry to the parade to celebrate his first St. Patrick's Day with Grams, Cousin Nic and Anna.  Everyone was decked out in green and Grams even had fancy glasses on (see photo!) to celebrate and a good time was had by all!  Henry and I ventured to St. Louis to see Grandma and Grandpa Simpson for our first "across state" trip with the help (and accompaniment) of Cousin Leo, Uncle Bob and Aunt Colleen (all in the same car!!!)! It was a blast and nothing short of wonderful to be back home with the little man! Julie has taken him on many walks, visited the park on numerous occasions and I even snuck him out to the Kansas City Zoo with some friends. We took our first trip with Henry to Allen Fieldhouse (KU's homecourt) to watch the women's Jayhawk team defeat Illinois State to make it to the WNIT Championship game. It was pretty inspiring:) Henry even got a picture with one of the players (thanks Darcie and Renee!)- so cute!

Julie and I attended a local support group for Congenital Heart Defect (CHD) Families on a Monday night in March upon recommendation of the social worker at Children's Mercy Hospital during our inpatient stay after Henry was born. We had a friend babysit Henry and braced for what I thought might be a difficult night. It was a very relaxed environment and families were able to bring up topics they were concerned about and/or experiences they were having to obtain insight from the group. Amongst conversation so many helpful experiences were shared from where best to have your child's labs drawn to what surgeons families had good experiences with. What I thought might have been a depressing night ended up being exactly the opposite and I was rejuvenated by the strength of these parents to continue to love and advocate for their children. It was overwhelming and I feel so fortunate that we will be in this kind of company as we learn about Henry's medical needs and options in the future.

It was wonderfully full month and we are again thankful for all the experiences with him and love and support from you. Keep him in your thoughts as we try to help him turn this corner and gain some much needed weight! As always, more pictures of our adventures have been added to flickr.com to share.