Wow, what an intense couple of weeks it has been around here! The stress and anxiety are really starting to pile up. It generally feels like we are back on the roller coaster ride that we became so familiar with while the girls were in the NICU: one step forward, two steps back. Make a little progress, and then have what seems like a huge setback. Up and down, up and down, over and over. Quite honestly, I’m tired. I’m tired of nothing seeming to work, I’m tired of fighting doctors, tired of racking my brain to come up with something else to experiment with to see if it will help problem A, B, or C. And life doesn’t stop just because you are struggling; that train just keeps on moving. I, however, am a mom. That means I do not get to stop, no matter how tired and overwhelmed I am. I will keep fighting until we find something that works or our situation gets better. I won’t stop just because it gets difficult. I might complain, but sometimes we all need to let that frustration out. Aaand that’s enough of that. Moving on…
Addison did very well with her new eating schedule for about a week, and then she started throwing up more than ever, at least once (usually twice) per day and she has also been extremely irritable. When she throws up, she has a really rough time and she holds her breath for a minute or two. It is actually pretty scary looking. So, I called the GI doctor’s office Friday morning. I explained everything to the nurse and she said she would send a message to the doctor. Of course, I never heard back from the doctor, and Addison continued to throw up. On Monday, I ended up calling and having the on-call GI doctor paged. He wanted us to try doing a continuous feeding at night, and smaller amounts during the day. Basically, she will get half her food at night and half during the day. The tube feeding will run for 10 hours at night, then during the day, she will get 50 cc five times. He also wanted me to increase her dose of Prevacid. He said it won’t stop her throwing up, but it will decrease the acid in her stomach so that it doesn’t damage her esophagus when she does vomit. We were a little concerned about her vomiting during the night with her tube feed running, so little miss is currently sleeping in a pack and play right next to our bed, where I can hear her and see her right away. She likes to be close to us anyways, so you won’t hear her complaining. (She will be the one that always wants to sleep with Mommy and Daddy; I’m positive). I just wish that something would go smoothly for her for once. We shall see how this new schedule goes. Addison started Occupational Therapy last Thursday. She will be getting some awesome hot pink hand splints to help keep her hands open since the majority of the time she holds them in fists. They theory is that the splints will hold her thumbs straight, which will help the rest of her hand relax, which will (hopefully) in turn help her arms relax as well.
Violet now has SIX! (that’s right 6!) teeth. That kid is not messing around. She loves to use them too! Violet loves to feed herself. She picks up something, puts it in her mouth, looks at me and giggles. She is now crawling all over the place. Oriana leads the way and Violet follows. Violet pushes with her left foot and pulls with her right arm most of the time. She is practicing getting up on her hands and knees though. She and Oriana had a NICU follow-up clinic appointment last week. They were slightly concerned about Violet’s lack of babbling (she squeals and coos and giggles, but doesn’t do many consonant sounds), and they said she should really start picking up the pace within the next month. Well, Miss Violet started making “d” and “g” sounds the very next day. Apparently, she just needed the proper motivation. We also have to work on her hip strength. Her hips are very, very flexible (you should see the splits this girl does), which is ok, but the OT wanted to make sure she was building strength along with that flexibility. Violet does this great little dance, in which she opens her mouth and wiggles back and forth. It’s hilarious and I think I have a video of it to post!
Video of Violet’s “dance” as promised:
Oriana will be getting her top middle teeth soon; her gums feel swollen. She is pulling herself up to stand on everything, all the time! She stands in her crib and yells when she’s ready to get up. She has also started clapping, which is adorable. She hasn’t quite got the hang of picking food up and putting it in her mouth yet (Violet says, “Haha! I did something first!!). They had no concerns about her at the NICU follow-up clinic, because as usual, she’s a champ!
We were hoping for some smooth sailing, but no such luck yet. Addison is back in the hospital because of her feeding issues. As soon as I get a chance (and don’t have to type with one hand due to holding the princess in the other), I will post details. In the meantime, thank you for all the love, support, and prayers.