Henry is two months old!

Henry is two months old! Eventually I'm going to stop being so surprised as time sneaks by, but every mile marker is exciting and such a gift. It has been a fun couple of weeks filled with more "firsts", visits with friends and family and doctors appointments. We've moved to the blog in hopes that "keeping up with Henry V(ance)" will be easier for you to check on your own without me overwhelming your email inbox. I'm going to try to maintain a monthly blog with updates, so check it out as you have time.

Henry is 9 pounds and has been hitting the normal milestones we have learned about such as following a rattle from midline to the side, finding his hands, picking up his head during tummy time and looking both directions, making eye contact and smiling, etc. There are so many in these firsts few months it's amazing to watch. He found his hands last week and we have yet another clue as to when he is hungry when he is jamming those long fingers in his mouth:) Finally the smile has arrived! We had waited patiently... seen it emerge on many occasions then followed by gas or crying so we hadn't officially counted the "first" yet. Then this week we experienced the full on smile+dimple that will make your heart melt. Such a treat! He does also have the other end of the spectrum down pat and is now looking directly at us, chin quivering, as he begins to cry with a full-on frown. It is so cute and gets him immediate attention (we're in so much trouble when this kid learns how to use this to his advantage!).





We've had several doctor's appointments in the last few weeks... all encouraging us to be cautiously optimistic. Our Cardiologist reported after an echocardiogram of Henry's heart that all remained the same and that his body continues to acclimate with his growth. She said this was not a sure indication that this was how Henry would continue to progress, but that it was a good sign. We discussed pushing back the cardiac catheterization, where they will look more closely at the heart by injecting a catheter and using dye to take an x-ray of his heart's anatomy. Henry had this test during his NICU stay which confirmed the ASD, VSD, pulmonary atresia and identified he was missing the pulmonary artery/valve. They were able to see the size and strength of the collaterals as well. This next cath would again indicate any changes and/or options the surgeons might see for future corrective surgery. Since Henry continues to do well and the collaterals from his heart to lungs continue to provide the level of oxygenated blood that he needs we decided to postpone the cath, which is pretty invasive and intense for a little one, for a few more months. We will return to see her in six weeks to plan further care.


We also had an appointment with the Immunologist who we were scheduled with as many children diagnosed with DiGeorge syndrome have a compromised and/or weakened immune systems. The Immunologist confirmed that Henry has a completely normal immune system and no abnormalities- which we were thrilled to hear! We will see the geneticist in March in order to continue to follow testing for possible DiGeorge abnormalities. Since DiGeorge is a "spectrum" syndrome, Henry could have all of the possible abnormalities or none. Some type of heart defect is common for these children and likely the cause for Henry's abnormalities. Of course we are hoping for no additional abnormalities in addition to the cardiology stuff, but have lots of support from programs/clinics should he test positive for any along the way. We have already enrolled in a program called First Steps that assists children with disabilities including DiGeorge and we have loved the support so far. Assistance from a dietician/nutritionist and occupational therapist will help initially with the option of continued care and adjustments in services until Henry integrates into the school system. Again, the support available has been amazing and we're fortunate to have this for the little man.


I plan to return to work at the end of February and Jules and I are working on determining our childcare options for Henry as doctors have recommended that he not attend regular daycare. We are hoping Jules will be able to elect a weekend alt position in order to stay home with Henry during the week so that we can provide consistent care for him, but we're still working on the details. I assumed this transition back to work after maternity leave would be easy, but I had no idea that I would enjoy being with Henry 24/7 this much. Jules will likely have to appease me with hourly updates to get me through it!


We attended Henry's fund raiser last Thursday and were overwhelmed by support and love. Many of you attended or donated online and we cannot thank you enough for the support. We have started a bank account for Henry and will use the funds both for the previous care Henry has received and hopefully for a future surgery to fix Henry's heart. Below is a picture of Henry and Henry's cousin Leo horsing around at the party... it was an awesome night if you can't already tell by the smiles:)

As always, thank you so much for the love, support and well wishes. We are truly blessed not only with Henry in our lives, but you all:)