It feels so good to type those two words in to the opening line of this posting, especially after the crazy week we've had.
First, last night was a lot better. We had Noah at 3/4 liter for most of yesterday afternoon/evening and turned him up to 1 liter during the night just so we wouldn't chase his machine all night but thankfully his sats were high 90's/100 for most of the night, no more 1.5 liter! Yeah! Today after meeting with the Pulmonologist he recommended we leave Noah at the 1 liter for the next week just to give him time to get over this cold and get stronger. They changed his Pulmicort dosage for his Nebulizers. They did say his chest x-rays from Monday (which I took with me) looked better then his last x-ray at the hospital before being discharged from the NICU. Other then sneezes and a bit of a stuffy nose Noah seems in better spirits today. You know, the specialist also mentioned that it is possible both boys are starting up with allergies. I knew this was a huge possibility...especially living in polluted Central California. Too bad they don't test for allergies until the age of two! Aside from all of this the doctors observed Noah and didn't notice anything that seemed alarming (thank goodness).
The High Risk Clinic went well. It was nice, we saw our old occupational therapist that worked with both of the boys as well as a couple of NICU nurses that knew the boys and an old NICU Mom too, she brought in her daughter who was in the NICU with the boys and she looked so great! We both hugged and were just so glad to see our babies looking well....like babies! We really enjoyed her family and even shared Christmas presents this past December. Anyways, we didn't learn anything new about the boys. Noah is right on for his adjusted age, Jonah has mostly gross motor delays (which we knew; i.e. head control, trunk control, etc.) but his verbal is actually really good and the OT noticed he even is making sounds and noises past his adjusted age. Jonah's fine motor skills actually weren't that bad, he bats at things (especially lights or things he can see well) and brings his hands midline frequently. So all in all, we didn't learn anything knew and as I have really tried to be on top of things with the boys they didn't have any new recommendations (as both are in physical therapy, eye therapy for Jonah). Actually, everyone in the clinic kept asking if I was a nurse because I have been tracking the boys formula intake and charted excel spreadsheets plus graphs to show their trends over the past couple of months, in addition to our schedule of feeding/meds and at one point weighing of Noah's diapers (thank goodness he pees enough that the docs don't think we need to weigh his diapers anymore to assure he isn't retaining excessive amounts of water). Anyways, it did make me feel appreciated and that is a wonderful feeling as some days I just pray all my blood, sweat and tears will help these boys grow and reach as many of their milestones as possible.
We are now at home and it was an exhausting day! It always is, traveling back and forth. Noah hates, hates, hates his car seat. So for most of the round trip he would cry, cry, cry and not much consoled him so I am SO glad to be home. Right now he is playing around under his play mat and sucking happily on his arm (a new found habit he enjoys). Jonah is sleeping snuggled in his papasan and I am breathing a sigh of relief that today is OVER.
One more thing before I close out this posting, it is important that I admit that Shane and I have been so blessed in so many ways. I have my hard days, my angry days and my difficult days and I never have felt I should be dishonest in how I feel on this blog. Last night, Shane and I were trying to think of "good things" that have happened to us in the midst of all this craziness and it wasn't hard to think of a laundry list of good happenings to the Hanna family:
1. Our boys, even after only having a 50% chance of survival, are both home with us.
2. We have, so far, avoided another rehospitalization
3. Because of incredible health insurance the millions and millions of dollars that were spent in caring for our sons for several months did not fall on our shoulders. Shane and I were pondering how we would have indeed been bankrupt had it not been for our incredible good fortune at having all the right insurance plans to pay for the overwhelming costs of long term care.
4. The boys are gaining weight, ok so it isn't pounds and pounds of weight but as the OT said today, "It's important to remember that gaining weight and being healthy is good, no matter what else is said. It is so easy to get caught up in how much weight is being gained by preemies when often times we forget the bigger picture with these babies and babies that are healthy and gaining weight are doing well." So there we go.
5. As much as I have struggled with our move from Washington D.C. to Bakersfield we have been so fortunate to receive all kinds of incredible therapy and program care all thanks to the good old state of California. Both Shane and I know much of what we have received would not have happened if we would have lived elsewhere.
The list goes on and on and we are grateful for the fact that it doesn't take long for us to remember our blessings and how lucky we truly are.