So, we've been altogether absent from the internet world for quite a while now, but we have good reason. We finally got to come home and we have been totally consumed with enjoying life at home with our sweet Harper.
Dr. Robinson mentioned the possibility of going home with a feeding tube two weekends ago, but I tried not to think much of it to avoid yet another disappointment. That next Monday, Dr. Carroll mentioned the same thing and asked how we felt about it. We, of course, were all for bringing Harper home...no matter how much work or equipment it would take.
So the very next day, the case manager got to work trying to coordinate everything: equipment rentals, insurance coverage of everything we would need, home health nurses to come out and visit us, and referrals for special programs to help Harper. Meanwhile, Dustin and I got busy learning everything there is to learn about tube feeding, checking tube placement, operating the feeding pump, drawing up medication, and how to work the monitor (most importantly...how to make it shut up).
I still didn't get my hopes up. Every time I even mentioned the possibility of going home, I followed it up by saying, "if it even happens." Up until the very last minute in the NICU, I refused to let myself believe that it might actually happen because I just couldn't handle another disappointment like the first two.
I could hardly believe it when we finally got the okay to walk out the door and take our baby girl home.
I was so excited, relieved, and just very, very happy.
Then we got in the car and Harper's monitor kept going off and it was almost time to feed her and I began to feel the weight of what had just happened. We are totally and completely on our own now. I don't know that I have ever been more anxious or overwhelmed than I was on the 1.5 hour drive home on Friday. It didn't help that when we hit the county line, you could hardly see through all the smoke from the fires around town.
After several days on our own, I couldn't be more sure that we made the right decision to bring Harper home...even if it is just for a few weeks. We had a really rough last week in the NICU and for whatever reason, we just didn't receive the same level of care that we had the first 2.5 weeks, which was quite frustrating for me. Overall, I am extremely pleased with and thankful for the way that Harper was taken care of. We had so many excellent nurses and Harper was blessed to have them. A big thank you to Aimee, Lin, Jana, Susana, Jamie, Stuart, Bennie, Cindy, Beth, Ebeth, Paulett, Veronica, Shanna, Tiffany, Shellie, Suzie, Jan, Dee, Dr. Carroll, Dr. Contreras, Anna, and so many others that my tired mind can't think of right now. It is certainly a special group of people there that take such good care of these tiniest of patients (and their tired, hormonal mothers).
So we are home and loving it. We continue to tube feed Harper so that she can have optimum growth these next couple of weeks before surgery. Dr. Robinson feels pretty confident that sometime between 6-8 weeks of life, she'll become so symptomatic that we must go ahead with the surgery. She is 4 weeks old today, so we don't have much time. In the meantime, I'm going to soak up every single minute that I have with Harper. I'm going to make sure that she is the very most loved baby in the world. It feels so good to know that she's loved 24 hours a day now instead of just the 12 that I was able to be at the hospital. We are so blessed to have this time with her at home.
Blogging has most likely become a thing of the past for me. Taking care of Harper is pretty much all consuming and it seems like there is little time for anything else. I know it will get easier as we go, but it won't get any less time-consuming, so forgive me if updates are fewer and farther between. Thank you for checking in on us!
Here are a few pictures of our homecoming.
Please notice Harper being threatened by a boy with a wooden spoon. That's why my sweet boys have spent several days at Nemo's house this week :)