Saturday, June 27, 2009


We didn't get the official EEG results this morning, but the nurse said it did confirm seizure activity in Riley. We are hoping to sit down with Dr. Shah tomorrow or Monday to go over the results in more detail, but he works third shift and was not expected to come back in this weekend. They've continued the Phenobarbital treatments, along with the mild sedatives to keep her calm. In addition, they've put her on "water pills" to help the fluid move through her lungs easier. Combined with the CPT treatments, this will hopefully open her airways a little more and allow them to lower the PIP and O2. So far, none of the doctors or nurses have seemed overly concerned about all this, so I guess that is reassuring. They keep throwing out the lines we've been hearing over and over - "We see this a lot in premature babies", "This isn't that abnormal", "They usually turn out just fine", etc.

I need to clarify something I said yesterday... She is going to be on Oxygen for awhile, and isn't being weaned off that, just the ventilator. Their goal is to exhibate her (take the tube out of her lungs), and move her to a nasal respirator. But her lungs need to be able to breathe on their own before they can do that, with additional O2 support.

Also, I forgot to mention her weight gain. The past few days, Riley has been over 1300 grams, which is about 2lb 13-14oz. She's quickly approaching the 3lb mark - maybe by her 1 month birthday on Thursday? We can only hope!

I came across this photo from the night Riley was born. With all the bad news coming across lately, thought everyone could use a good laugh at me in my operating room scrubs...


  1. I'm happy to read that you received some results and will be able to discuss them in more detail with the doctor soon. It's also reassuring to know the doctors and nurses say this is common and that they don't seem too worried at this point. Congrats to her for putting on weight! All that awesome pumping Pam is doing, plus the extra supplement must be doing the trick finally! We are constantly thinking of you and sending positive thoughts your way.
    Love you all!

  2. I second everything Nikki said... couldn't have said it better myself. It's nice to know that the nurses and doctors do not seem too concerned about her recent activity. Hopefully their assurance will all pay off soon and she will start progressing once again.
    I'm glad to hear that she is putting on more weight! :) That's our little angel.. slowly getting herself healthy enough, so she can go home one day.
    Can't wait to see her soon! Love you all.

  3. Christal's friend again...chiming in. If you want me to stop, just let me know. But, I wanted you to know that Jade never had a single seizure while she was in the NICU...UNTIL she came home. Please be thankful that they reared their ugly head BEFORE you left the hospital because I can't put into words the trauma I went through when I had to rush her back to the hospital after a grand mal seizure in an ambulance only one month after she was finally released.

    She has been on phenobarbital since April 8th, 2007 and hasn't had a single seizure since that horrible night. The last EEG was normal and they are going to do one more EEG on her this August and if it proves normal, as well, then she will be weaned off the meds for good.

    So, yes, premature babies DO grow out of it and take a big sigh of relief that you know about it BEFORE you leave the hospital instead of least there she is constantly monitored unlike at home.

    I'm glad she is doing better today. I am still praying for your family.

    ~Lin Andrews

    PS: Don't ever expect to see Dr. Shah before 9PM...that horrible weekend we were in the hospital for the grand mal, he didn't show up to our room till 10:30. We had to wait over 24 hours after the incident for any feedback. Also, I saw him twice in the two years he has been our doctor...when she begins appointments at his clinic, it will take a miracle for him to be the one who you visit with you while there. He is a great doctor, but NOT a people person.

  4. I had all these things to say then read what Lin wrote and she said it all. Dr. Shah is a great doctor but not people friendly. He loved dealing with Scott because he could talk dr. lingo and not have to use layman's terms. Have to ask though...Joey, do you feel like a giant compared to him? We sure did! We are still praying for Riley everyday and many times a day. Thinking of you always! Annie

  5. I just HAVE to say it Joey... The scrubs make you look like a big kid in footsy pajamas. Who knew Pam had two kids? :)