Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Sunday, October 9, 2011

Calmer for Meagan.. more Stormy for Mama

I headed over to Children's later today than usual.  I went to 9am Mass this morning and then brought the kids donuts afterwards.  I did some things around the house (laundry, diapers, dishes, vacuuming, etc..) and then got ready to go.
 When I arrived, Meagan was fussing ...I picked her up and held her. Within seconds she was rooting around and snorting at me just like my other babies when they were hungry.  I went ahead and put her to the breast and she immediately calmed.  She latched on 'ok' to me but she didn't eat. She just sat there all comfortable and ended up dozing on and off ...  I was hoping she'd just "get it" and suck at least a little, but, she didn't.. I was happy, though, that she was just laying there on me  -- at least she's 'getting to know' me, and it's good for my milk supply. Also, the more familiar she becomes just doing this, then hopefully one day she will begin to suck and actually get some milk for herself. 
The Nurse said that the speech therapist had been by earlier and tried the bottle with her, but to no avail.  She said Meagan absolutely screamed when she was working with the bottle.. .  If she would just remember how to suck, I think she'd be a great nurser! So I'm still holding out hope that nursing is the direction she'll eventually head - it seems that way for now especially with how calm she is at the breast compared to the bottle. I'm getting to the point where I'm very frustrated with their approach.  Meagan completely freaks out at the bottle - and is calm with me - yet Speech continues to insist on trying the bottle.  Tomorrow, I'm going in there back to my old "pushy" self -- I'm going to insist the Lactation Consultant come work with us to help Meagan nurse - at least she's calm and not freaking out - which is a pretty good goal when a baby is trying to feed. No baby feeds well when they are stressed out - and in her case, she isn't even sucking yet, so I want her as calm as possible so we can try to help her remember. 

I am a bit worried about the sucking. She downed bottles the weekend before her surgery - even up to 36ccs!  Since surtery, there has been no real attempt at sucking at all. She will sit on me ok because I think I just fill her up more when she's rooting around versus the tiny bottle nipple they offer to her.  But no sucking - on the bottle or me.  She does chew on her paci - but what we've noticed over the last few days is she's not sucking on it at all - she's chewing.. not using her tongue.  I'm going to attempt two requests: Work on the nursing - she seems more comfy with me anyway... and also if they are going to try a bottle, use a wider nipple. The little tiny thing they are trying to give her is SO unnatural.. if they don't have any there, then I'll bring in my Playtex wide nipples to use -- at least it's more similar to me, which, is what she has obviously shown comforts her.  I do wonder though if she'll ever remember how to suck - she definitely roots around and opens her mouth wide - but there is NO closing of her mouth.. no latching on to me or a bottle with her tongue/lips.. anything. It's like she completely forgot from two weekends ago - and sucking is such an instinctual behavior of babies, that it's raising my concerns.  I guess we'll see what they say tomorrow -- if she shows ANY sort of progress - even sucking for only 10 seconds.. I'm willing to wait and see what she does. But if we are already at the end of next week - and she is still not sucking at all, they'd better start talking about Plan B .. because I will not sit by while she sits in the NICU another week or month just to learn how to suck.  Therapists can come to the home to do that - and she doesn't need to be barred from the daily connection with her mother for this reason if we are still in the same place 10 days from now.  Having more nurturing at home with me will probably enable her to do more with it than laying in the NICU being relatively ignored.

I also found out that apparently, at least one of the 'irritants' to Miss Meagan has been a UTI.  Her urine came back positive, so, I'm glad they started antibiotics already over a day ago.  They did retest new urine, and if that comes back negative, they may discontinue the antibiotics then over the next 48 hours.  If it's still positive, then they'll lay out a plan as far as how many days she should get the treatment..etc..  At least it was one answer as to what could have possibly been bothering here these last 3 days. 

They are watching the fluid pocket closely on her shunt site.. they say it is fine for now, but, something deep down tells me that there is something "up" with the shunt.  Her head circumference came down nicely over the last two weeks... and for the last 6 days it's hovered around 44cm.. going back and forth each day to 43 or 44.  But then over the last two days, we've had our first consecutive set of rises - where it hasn't gone down before going up again. Soo, I am cautious watching those numbers and gauging what they mean paired with her 'off' behavior..etc.  I'm hoping it's nothing to do with the shunt because I don't want to start from Square 1... but.. if it is, then I hope something tips them off as soon as possible so we can take care of the situation efficiently.

The fluid pocket we're watching

Feelin a little better today

Crazy hair!

I was showing our 2 year old pictures of Meagan on the computer... she snuggled the computer and said "Night night baby."  So cute!


  1. When my Shiny was new, she would latch but not suck, and I ended up manually compressing the breast to get milk into her. Babies who have a difficult time sucking often end up with a habermann feeder or tube fed... but I and some other mamas with non-sucking babies have managed to do feeds by essentially hand-expressing milk into baby's mouth. Can the lactation consultant and speech therapist look into this? The two babies I'm thinking of, my Shiny and a friends' baby, both were worse at bottles than the breast by a huge margin, but were able to maintain or even gain with the hand-expression method. (Shiny had neuro issues that prevented her from coordinating a suck, the other baby had a fully tied tongue, non-operable, and could not move her tongue at all.)

    For me, the technique simply involved getting Shiny settled in a position where I didn't have to hold her, where gravity would help hang the breast over her (lots of pillows involved), and then I would use my free hand to compress the breast, working all the way around to get all the ducts, milking the milk down into her mouth, while paying attention to how she was coping with the flow. The good news about breastmilk is that it is MUCH less prone to causing aspiration pneumonia, compared to formula, if she's got swallowing coordination issues.

  2. You have so many people giving you ideas and I hate to throw one more thing into the mix (I'm half kicking myself for even writing this), but sometimes hospitals and dr. staff don't look at things like they are trying to bottle feed her when you aren't even there (oooh that gets my mama goat up!) and Meagan doesn't know them. She knows you and Brian and if they are adamant about bottle then I would be adamant about only working on it while you guys are there until she starts to be more interested, etc.!

    I think you are right to fight for the feeding issue/plan to be resolved. Kids go home on tubes ALL the time. We have a set of twins at our parish one is still on a tube and they are like 6 mos old but they are both home!!