Project Clara

After almost a week in the surgical unit, Clara finally got to come home this week!
Before being discharged, she had a swallow study that showed that she was silently aspirating thin liquids. They decided to change her NG tube back to an NJ, meaning it would bypass her stomach and go to her intestines in order to decrease the chance she would breathe in her food. The good news: we can't place an NJ, only the hospital can, so I won't have to stick that through her nose again right now. The bad news: if it comes out, we have to go to the hospital. Plus, she no longer had much food coming in to her stomach, so when she was awake, she felt hungry. We could give her just 5 mL of food through a bottle every 6 hours. Clara is not fooled-that is not a meal.
We were all set to bring Clara home on Tuesday, but had a small setback Monday night. While Mom, Jenn and I were steaming the house and organizing everything for Clara's return, Clara was at the hospital coughing and throwing up. They hoped it was just from the aspiration, that she was finally trying to fight the liquids from going in to her lungs, there was a possibility she was sick. Since she has no thymus, the hospital is extra cautious in cases like this. They moved her to a sick pod on the unit where she would be more closely watched, as would her visitors, to ensure her exposure to germs was minimal. When we visited on Tuesday, they advised us they had not seen other signs of being sick and as long as the cultures came back clean, she would come home Wednesday. We also had a visitor-Hollie and her daughter Elaina, from the IHH group, stopped by. Elaina also has 22q and it was so great to meet them, hear their story, and feel more a part of this great community.
Todd and I left early to go home and rest, since Mom was coming up that evening to check on the baby. Late that night, they advised her the cultures looked good and she texted me to confirm-Clara was coming home!
Wednesday at the hospital was a flurry of activity-we met with the nurse practitioner to review discharge instructions for meds, feeding, etc. They arranged a home health company and early intervention to come by to set up her oxygen, feeding pump, and speech therapy. The nurse and tech helped us gather so many supplies, we set up follow up appointments with cardiology and speech. We picked up prescriptions, packed our bags, put Clara in her car seat and, after about 6 hours (plus 2 weeks in the hospital, plus 9 months in me, plus the months before while we were hoping for her.....) it was time to have our family together at last!

After months of planning and creating her nursery,
Clara is currently parked in her bassinet in the
living room with all of her equipment :)

We got stuck in traffic headed home, and it was rainy-I kept hoping the rain would stop just long enough for us to get her in to the house safely. We got calls from the home health people arranging delivery, and found there was a misunderstanding on time. The food pump was there, we weren't, so they would come back "later." I stressed to them that it should be soon, as Clara had been unhooked for a few hours already. We got home and the oxygen delivery arrived shortly thereafter. We were now the proud custodians of a giant tank and a few travel tanks, and about 50 feet of tubing to make Clara more portable :) My mom also arrived with dinner and two very helpful hands, she set to cleaning and organizing us right away while we tried to keep Clara calm. The home health nurse then arrived, and started working on administrative things while we learned how to work the oxygen. And finally, the feeding pump was delivered. I was hoping the nurse would get Clara hooked up quickly, as she had basically been crying for about an hour at this point. Instead, we spent time going through paper work over and over (how many times can I tell you Clara's DOB and how much she weighed?) and then she showed Todd how to 'properly' give Clara a pacifier and then she weighed Clara and oh I was losing my mind-Please can we just feed my baby and then we'll talk about all this stuff??
Finally, we got the pump set up and Clara was much calmer, as was her mom. Todd and I got some dinner ourselves, while Nana Wallace watched Clara for us. Things were quiet, Nana left, and after the longest wait of our lives, we were home with our baby!