Wednesday, April 22, 2009

Little Sucker!

Yeah--I didn't get around to posting anything yesterday. I had a bit of a meltdown. Nothing specific happened (Lexi is fine), no one did anything wrong. I just kind of cracked. I was doing fine until late afternoon and I can't really explain what happened or what triggered it. Maybe a combination of 2 weeks in the NICU, balancing time as best I can between kids, hearing worst case scenarios from the doctors (no, she does NOT have leukemia) and balancing visitors while trying to fit in my own time to spend with Lexi and pump breast milk (ouch!) and talk to doctors and nurses, I just kind of lost it. Poor Jason thought he had done something wrong. Nope. Everyone handles stress differently. I put on the smile and really convince myself that everything's fine and then--crack. I'm better today--still tearing up a bit at times, but nothing like yesterday. It's not hard to tell if I'm cracking--tears, sniffing, and lots of breathing as I try to hold it together. And don't talk to me because I can't respond because I'm trying to breathe to keep from losing it. So if you ever see it happen, don't talk to me and give me space. It could get ugly.

Now, as for Lexi. She continues to do really well with her feedings. They continue to increase the amounts of breast milk she gets through the tube in her nose. She's up to 12 mL/hour today. They've discontinued her lipids (fats) and if she continues this way, she'll probably have her TPN (nutrition) discontinued by the weekend. I think the doctor said that when that is done, they can take out the PICC line in her foot since she won't be using it any more and it can be an infection risk. Her weight is up to 5 lbs 12 oz, the weight she was when she was born.

Yesterday the neonatologist and infection control doctor were concerned again about the white blood cell count, but after the blood test results they got today, they are no longer concerned and it's considered resolved.

The greatest accomplishment of the day: I was discussing the feeding plans with the neonatologist and he agreed that I could try to breast feed Lexi today. Let me clarify. I can't really breast feed because then they can't tell the amount she's taking in. So I could pump and then right after that I could breast feed since she wouldn't get much (if anything), but it's a way to see if she shows any interest in latching on. I've read many things about how babies with Downs can have some difficulty with this. For one, they have lower muscle tone and can have difficulty sucking. Also I believe that the roof of their mouth is not as arched and that it can also cause difficulty with latching on. So after pumping, I tried to have her latch on was instant. She would only suck a couple of times (probably because she wasn't getting anything) and let go, but she latched on 5 times with no problems. What a sucker!!


  1. well on the melt down, you are doing great! Prenatal diagnosis or whatever, wow. I was in a coma for 5 months.

    Now on the white cell counts. I will say "go Lexi" and let you relish in the moment...and chat later

    On the breast feeding? Keep pumping, kudos on the latching, and if it doesn't work out, whatever.....bottle fed breast milk is cool too!

    I hope to meet Miss Lexi and you soon

  2. Darn, my 1st one didn't take...anyway, yeah, you do act like a tough one! ;-) Meltdowns, totally normal and probably overdue. One can only take so much medical info shoved in their brain and it's regarding a 5 lb being we're supposed to be responsible 4. And there's "maybes" and waiting and people who mean well, but are annoying, all in a tiny space that's not home.Thot of u & chuckled when I heard "Meet Virginia" the other day. Love ya.

  3. Hi, I am not sure if you remember me. My name is Lisa Jones. I am Jeff Kamp's sister. I have been reading your blog and watching what Jill says on facebook. Been praying a lot for you. I think you are doing great and You should be really proud of yourself and your family. Don't worry about the meltdowns. I had them a lot after I had Myles. He was 6 weeks early and weighed 5 lbs. I had to get up every 2 hours and feed him. He is fine now and a healthy 11 month old. I know that is nothing compaired to what you are going through but I did have a lot of Meltdowns. Well keep up the good work and you have a beautiful baby and family.Lisa