Natalie is 30 weeks gestation (will be 31 this Friday). She is 16 inches long and is 3 lb 3 oz, though her weight fluctuates a lot depending how much fluids are in her at the time so her actual weight is hard to figure and is probably a little bit less. The hair on her head gets lighter everyday and she still fights with her nurses. She loves her pacifier and it seems any agitation in the world can be fixed by popping it in her mouth. She was old enough last week that they took the temperature probe off of her (they can just rely on taking her temp every 4 hours, they do not need constant measurements), which means they can now swaddle her. She absolutely cannot fight sleep once she is swaddled real tight (add that with the pacifier and oh man, it is like she was given a sedative). She is acting more like a newborn in the fact that she stays awake/aware for periods of time and then passes out for a couple of hours. And like any baby, she does not like getting her face wiped (video below).
Last week I noticed she was twitching a lot and I told the nurse. Because of this, on Monday, she was subjected to a brain ultra sound and then an EEG. You should have seen the look on the EEG tech's face when he saw how tiny her head was which also included her PICC line and her strap for her mask that had to stay on. He had to fit 11 electrodes onto that tiny head, but I have to give him credit for being so gentle that she barely noticed. They ran it for an hour and then she did not enjoy having them removed. They usually wash her up during the night, because of gunk from the tests I got to see her version of a "bath" and it was, of course, adorable.
The neurologist came down right after and told us the tests came out good. They did not see any activity of seizures (which they can't promise there is none, but it is a good sign). I described the twitching and the doctor flailed his arms in a jerky motion. I exclaimed that that was exactly what she had been doing. He responded, "I know, I have been a neurologist for 35 years." He said she is just a tremulous baby which can happen with preemies. However, at around 35 weeks she will have an MRI because all early preemies here do before they leave.
Yesterday (Tuesday), she continued with her good days. However, her Bubble CPAP machine was not bubbling. The bubbles add a certain amount of pressure that she was not receiving. They tried all their tricks and it was not happening, but her numbers were still really good. They think they will be able to move her on to the next step in her respiratory journey which is the Nasal Cannula, which I would love because then I could see her pretty, little face again. Today her bubbles are working, so I guess we are going to wait and see. But it looks like she is moving in the right direction either way.
On Tuesdays, all the doctors from the NICU group (their practice is called MANA, MidAtlandic Neonatology Associates) meet at once for their weekly war planning session. There are about 10 doctors, and I have worked with almost all of them. This meeting lasts for hours (from Natalie's room I can see the conference room so I know) and they discuss all the patients and make a game plan for the week. Afterwards, Dr. Levi, who was on shift when she got really sick and then had surgery, stopped by to check in. He said he hasn't heard much about her, so it sounds like she is doing well. That she is feisty and is lucky to not have had a roommate in awhile because "she is what we here call, a diva." (We already knew this). He reminded me that as hard as it is, everything that has happened with her so far has been fixable and that is not always the case. He said nothing is harder than there being a problem and there not be a procedure or known treatment for it, which of course happens. I really appreciate the fact that these doctors take the time to come in and say hello even if they are not on shift, but walking through the unit. They always ask how she is doing and then also how we are holding up and I never doubt how much we are cared for here.
Now we are just waiting on a new EKG to be done this afternoon to see where we are with her PDA. This is going to determine whether they need to do the procedure soon or whether they can keep holding off. Hopefully, we should hear by the morning. Obviously there is no emergency need for the procedure since she is doing well, but I'm hoping they can give us some timeline.
Since it has been six weeks that means I was supposed to return to work or start my Family Leave. Oops. Obviously with her complications this schedule has been delayed and I will probably be out for this week and next week as long as things go well. In New Jersey, we get up to 6 months family leave, so I have to make sure I have enough time to be home with her when she gets out of the hospital which means I will return for some time while she is still here. I have not figured it all out yet, but am confident it will work out.
On another note, over the past few weeks I have gotten many private messages, calls and texts. I do read them all, but have not been able to respond to most of them. Please know I appreciate all your love and support and will get back to you when I can.
And now for your dose of Natalie Rose (no photos, but a video of her getting cleaned after her EEG which she is not happy about as you can see):
She is darling, but you already know that. :) Keep the good news coming!
ReplyDeleteGO NATALIE ROSE!!!