Sunday, December 22, 2013

Fast Forward....1 yr later

I didn't want to be like all the other blogs that once they got home and got into the swing of things they never updated, but as soon as Tara came home the reality is there is a reason they all stop. Life is so busy, and you have to live it and its hard to find time to write about it. A lot has changed. They are both doing very well, and once again we ALMOST spent another Christmas in the hospital. Until two days ago I had spent an entire month living with Tara in the hospital and only leaving for work. Insurance agreed to pay for a specialty rehab hospital that has one of the best and only feeding therapy specific programs in the country!

My two decades of shoulder dislocation from trying to punch my brother in the face when I was 14 caught up with me, and so my inevitable surgery could not be postponed any longer. When my kids are older, when I have sick leave built up and qualify for FMLA again, etc. But ultimately despite not being able to pick them up and needing so much help and such a intensely painful recovery, it was a blessing because the month she was in the rehab hospital I was on a 40hr work restriction so the frequent overtime mandates at my job did not affect me being there with for the majority of her stay.

Getting Tara off of the feeding pump and eating only by mouth is a long process, but in 1-2 years I'm sure we'll get there thanks to the techniques they have taught us and feeding therapy twice a week. Her tube feeds only occur during naptime and nighttime and she is free to roam. I have created a feeding pump trolley I hope to patent and sell. Big metal IV poles getting knocked over into tiny heads and limiting my little busy body from crawling around were just not acceptable. Carrying the "mini" backpack that is not so mini on a 17lb toddler with a pump and 350ml of formula is not exactly feasible, so hopefully this year I can offer it for sale to help others in our situation as well.

Tara is happy and healthy with a working vocabulary. Mama, uh-oh, baby, bubbles, hi, bye bye, all done, no, wow, yeah, papa (grandpa), and she said her brother's name once! She is still behind in her gross and fine motor but weekly therapy is helping her along. She has a goofy little crawl where she hikes one leg up in front of her, but we are working on that too. Her lungs have improved so much she only gets one inhaler twice per day. She did have two hospitalizations for viral infections, the first for 5 days. The second she had pneumonia in 1 lobe of her right lung and she was only in the hospital overnight with steriods and NO OXYGEN! The lungs grow dramatically the first year and overcome their lack of development in prematurity to an amazing degree. While her motor skills need some work, she is smart as a whip. It took me a while to realize that she was pretending to fall asleep during therapy to get out of it, and when she rounded the corner and the therapist was out of sight it was party time! She even would announce "All done!" at the beginning to attempt to cut it short, but alas she is learning she can't outsmart us despite her best efforts.

Vivek is walking, though he likes to drop to the ground and crawl still pretty often. Talking is not his interest right now and he sounds like the Tasmanian Devil from my childhood cartoons, so we may begin trying to baby sign. He and his sister are buddies and play together constantly, and he only occasionally pulls her awesome pigtails. As of a week ago he now has a full set of teeth. It was very rough teething so much with his low preemie pain tolerance, but ultimately a blessing now because I can sit the kid down with a steak and let him chow down while we focus on feeding Tara through the specific behavior modification method.

The one thing that truly broke my heart last Christmas wasn't the hospitals or not being home with both was that I never got my picture with Santa. I don't even know why it was the one thing that really got to me. So this year I used my one 6 hour pass from the hospital to take the kids for a holiday photo session. They turned out great, and when I rounded the corner at the mall and saw the fat man I nearly burst into tears on the spot. And while things are never perfect and there are still so many uncertainties in the future, I love my babies more than life itself and no matter what happens I still wake up everyday feeling like the luckiest mother in the world. Happy Holidays to everyone out there in the blogoverse, and to those suffering from infertility my heart aches with you and I wish you all the hope  that someday your family will be complete. Never give up!