Sonia and I are still loving our private room. It is as close to home as we can have right now, and it is pretty darn nice. Everyone keeps asking if I am lonely, and I just smile and say no. I have had plenty of time to socialize and what I really wanted was to be left alone with my baby. We are bonding so much better and I am feeling so much more confident in taking initiative with her care.
Sonia thought things were getting a little boring lately, and decided to make a little noise today. She started her morning off with a low grade fever and a raised heart rate. The nurse was right on top of it and called to let me know. Thankfully, both of these symptoms subsided with a little tylenol. Because she is Sonia, however, they are doing some tests to rule out infection. It probably isn’t a big deal, but keeps everyone on their toes.
She tried a lolly pop today – early this morning before I got there – and I heard she did very well. I spoke with the speech therapist who said we probably aren’t going to have luck with the sucking, and that she isn’t too concerned about it. I tried the pacifier again last night because it had been a while, and I didn’t think it could do much harm. Sonia proved me wrong, however, and had quite an episode. She gagged pretty hard for a few minutes – which looks terrible because her stomach is tied in such a way that she can’t throw up. Following this she did what they call a “brady” which is where your heart rate drops for a minute because you are bearing down – in her case to gag – and then comes back up. Nothing came of the brady, but it could have caused her to pass out. It was a bit scary for me and enough to make me not want to try that again. Speech said they lose their suck reflex if it isn’t used by 4 months, and she doesn’t think Sonia is going to pick it back up by then. Instead, she has helped bring my focus back to getting Sonia to tolerate things in her mouth. Hopefully she will take better to the spoon and sippy cup when they are offered to her.
The biggest news of the day is that we finally have a date for the Cath Lab. Sonia is scheduled for Aug. 15th to do this procedure which will give the docs the clearest look at her heart they can get. From there they will plan her next surgery and put her on the surgeon’s schedule. It seems to be going by quickly, and I am doing my best to enjoy Sonia every day. Once she gets back from surgery we don’t know when we will be able to hold her again or what her life will be like. The best lesson in all of this is to enjoy what you have now, instead of dwelling on what you may not have later.
All the best.
Adorable picture of the two of you. Sonia looks like she is really chunking out and you are looking quite slim! That is really scary with the pacifier. I’m glad that everything is still going well and I hope that the cath lab goes well. I am thinking about you and Sonia a lot, you are doing a great job handling all that you have going on.
Love,
Brooklee