Now, this same nurse had informed me the night before when I went back to PCICU to see Brandt that he is "tongue-tied." I had not heard this term before and it upset me a little. I was like "What do you mean, my baby isn't going to be able to talk?!?" She said no, that it meant the tip of his tongue is attached too closely to the lips by the flap of skin directly under the tongue, and that it can cause eating problems or down the road speech problems. Perhaps under normal circumstances this would not have been a big deal, but after just going through an open heart surgery, and never having heard mention of this condition from a doctor or the occupational therapists who had been working with me to exercise Brandt's tongue, cheek and mouth muscles to prepare him for oral feedings--I was upset. The nurse proceeded to say it wasn't a big deal and they would probably "clip" the flap of skin when they did his circumcision. All this gave me the distinct impression she didn't know what she was talking about, because we had been told under no circumstances short of emergency would Brandt be able to have any other medical procedures including circumcision until well after his second heart surgery . . . logical given the fact Dr. Bradley does not want extra trauma to the body, especially trauma requiring anasthesia to cause additional stress. So now I'm envisioning his not being able to eat due to this "tongue" condition, and requested immediately to page the OT so I could find out if Brandt even really had this diagnosis and if SHE felt it was going to cause problems.
I talked to Glenn in the meantime, and he agreed Brandt shouldn't be dosed up with the meds--that maybe she had gotten a little over sensitive about normal "baby crying"--we'd spent enough time with him to know sometimes he just wanted to be changed, or turned--and duh, I spit up strong pain meds, too! He told me to calm down and talk to the OT and the charge nurse. Oops, our nurse that night WAS the charge nurse. By this time I was just plain aggravated because I felt no one was paying any attention to Brandt since he was doing so well.
As usual, Glenn was right . . . and the OT was in full agreement when I got to talk to her later in the day. She was not pleased the night nurse mentioned his condition, because she had not addressed the "short frenulum"--her preferred term for the condition -- with us for several reasons. She had noticed that it was too short for Brandt to stick his tongue out of his mouth, but until we even TRIED to feed him orally, there was no way to find out if it was going to cause a problem. She said it was like putting the cart before the horse to discuss treatment before we even attempted oral feeds. Secondly, I was correct in thinking that Dr. Bradley would not want it treated unless absolutely necessary. Thirdly, this small problem certainly did not call for attention in light of all the other medical procedures we were currently facing. She assured me that if and when it caused a problem, we would work through it.
I also was not able to get hold of a lactation consultant that morning to address some issues I was having with pumping . . . I was by myself in PCICU, even though I thought I was prepared for dealing with the waiting room, it made a huge different having to get myself and my stuff back and forth to the apartment, parking garage, and up to 4th floor . . . the PCICU was frantically busy, and since Brandt was extremely stable, his nurse was not even around most of the time. All these factors were quite frustrating, even though I knew we were just waiting on Dr. Bradley to be available to take the RA lines out. Because it was such a busy day surgery wise, all the visitors ended up spending most of the day in the waiting room while the newer surgery patients were taken care of, admitted, and even treated. I worried Brandt was not going to even get the RAs removed. But, finally late afternoon, the social worker came in from her rounds and was able to at least tell me that the lines had indeed been taken out, though we weren't able to get back into the ICU yet.
Other families waiting for word on surgeries/procedures had gotten really serious news about their little ones with brain damage from lack of oxygen, strokes, etc. I was struck by my pettiness in not wanting to wait for answers to relatively minor concerns, and hope I have grown in my empathy and endurance for both our own and others' medical burdens. Frustration and impatience certainly never help anything...
And, because he was RA line free, once I got to go back in with him, I was able to hold him again . . . JOY!! I had started helping with his care as I could and when his nurse was needed to care for more critical babies -- never thought I'd enjoy diaper changes and mundane tasks with such enthusiasm. The nurse said we'd be able to go to 7C the next day as long as there was a bed available, and Dr. Bradley even came by to say he was "doing very well" again. I pointed out it had only been 2 weeks since birth for him to be going to 7C already, and Dr. Bradley corrected me to specify it had been only ONE week since surgery. Thus the day ended much more happily than it started! Another wonderful event - Baby Evie, a newborn with HLHS from our home town, arrived safely to join Brandt in PCICU. I was thrilled about her safe delivery and praying for courage for her parents, knowing God could provide grace each day for their family as He had so far for ours.