Friday, June 24, 2011


Tonight Tim and I are trying a different feeding schedule.  I liked ok the scheduled I tried last night, but since it meant that Ilse got less milk overall during the day, and then I weighed her and she hasn't gained anything since when I weighed her a couple days ago, we're going to try something else tonight.
Today we've been doing meals of 100 ml every three to four hours, and giving it to her in an hour and half.  She's done fairly well on it.  Really well, actually, so tonight we are going to feed her 100ml from 12 to 1:30, then Tim will get up and put the bag in the fridge.  Then at 4:15, I'll get up and change Ilse's diaper, vent her little tummy and give her 100mls from 4:30 to 6.  At 8am we'll continue with 100ml feeds unless we see she isn't able to keep down that amount.  We might do a few meals of 80mls tomorrow, but the goal is 530mls per day BUT I want to give her extra since she has grown.  She is a pound bigger than when she left the NICU, so surely that warrants more calories than what the doctors there set up. 

Today she cried and cried when I gave her her bath.  I was sad but what can I do?  It seems like there are three things I have to do in a row that cause screaming.  When I chance her diaper she screams (it's not the diaper changing, it's the dirty butt that she hates), then I fix her button site with the medicine and new gauze, then I vent her tummy.  All these things result in outlandish screaming, but there is absolutely nothing I can do about it.  I am going to buy the tub I liked on the Target website.  Parents gave rave reviews, so I'll give it a try and hope Ilse will like it. 

The only other news I have is that ECI came out to evaluate Ilse.  I really hesitated even to let them come out, because I do not like government programs.  However, we decided to go ahead and let them do the evaluation, mostly because I just wanted to know what they thought, and based on what they thought I was going to continue or stop pumping.

Well.  Ilse does not qualify according to her development.  She is on track or ahead with everything.  That totally surprised me because that isn't supposed to be the case.  Nevertheless, she is doing so well with her movements etc., except for her head control.  The only reason Ilse does qualify is because she has a diagnosis and a mic-key button.  Interesting. 

We did decide to go ahead and do therapy with ECI, because it is free and because we like the OT who came out.  She is a down to earth lady who was optimistic but logical.  She was kind and not a government schlep.  She will work on Ilse's eating and her head control.  She was shocked that they didn't really give it the good ol' college try at the hospital, but really just gave up due to her diagnosis and some other factors.  When I told her that the doctors' and OT's criteria for Ilse being able to eat by mouth was her interest in a paci, she was shocked.

We will see what Ilse is able to do.  If she can't ever eat by mouth we will deal with that.  If I can't ever nurse her, we will deal with that, even though it would be really sad to me.  This OT did intimate I shouldn't worry so obessively about aspiration, and she was very disapproving that the hospital didn't do a swallow study.  Ilse can and does swallow, and I feel like standing up and shouting every time she does.  (I don't, though, since that would be quite disturbing to her, I think.  She is a little baby, after all.)

So, I won't give up the pumping just yet, and we will pray that perhaps, just perhaps, we'll have some sort of closure on this issue by the time Tim goes back to school.  That's my deadline for stopping pumping.  (we'll see if I keep it.)

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