Update & Frustrated Rant

They moved the boys today to a different part of the NICU. It's their "Special Care" Unit... still intensive care, but for babies who are fairly stable. Val is still in a "crib" but back on 2L of flow thru his cannula. He does fine on lower flow & room o2 levels until he eats... digestion takes up so much energy for him that he starts desat-ing( this means his blood oxygen levels drop too much, for those not familiar with NICU terms) & they increase his flow & o2. Con had to go back into an isolette in the wee small hours this morning.... he was having a hard time maintaining his body temp. They're trying to wean him back to the crib tonight. Val did awesome breastfeeding this morning, but was too exhausted to suck when we tried again this afternoon. Con was super sleepy & not into it this afternoon either, so we'll try again with him when we go back to the hospital tonight. Both guys are now getting all breastmilk for all their feedings (all feedings are still gavage for both) but they are digesting it all MUCH better-- far fewer residuals (food left in their tummy) & jaundice quickly disappearing.
In "mom" related health news (much less interesting): they kept me extra day in the hospital & hesitated releasing me yesterday as well. My blood pressure is still awful (170/110 on Monday, & now is less high but still up there ever since. like 150ish/90ish). They've got me on lasix & blood pressure meds (both safe for breastfeeding) & constant d/a's til they figure out what's going on. Til then, I'm supposed to be taking it "easy". Yeah, right.

Rant coming up: Sometimes I wish the only family we had was our little family-- me, N & the guys (& my mom). My mom has been the only consistently reliable & completely understanding support person we have lately. My dad seems fairly oblivious allot of the time. My brother finally came up to visit, but I seriously doubt that he came to see us or his nephews. He came because he couldn't afford to fix his truck (my dad's truck, really) & wants my folks to pay for another year of tuition (he's turning 25). My dad seems to expect us to do command performances of the babies, which is infuriating me. How often to I have to explain that they are NOT normal newborns? One of my sons requires oxygen to breathe, & the other is in a plastic box. They eat through a tube in their nose. Visitors wake them up & take away energy they need to learn to eat, breathe, stay warm, suck & swallow. Our days are dictated by the boys' schedule & needs-- they are our ONLY priority. I don't care if you want to "show off" the kids. They need rest & quiet, & if we have to alienate everyone we know to keep the boys healthy & moving forward then that's what we'll do. We lost 2 babies & went through a year of hellish medical testing & almost 8 mos. of a very difficult pregnancy to bring these boys here, & we are fully prepared to kick any amount of a** we need to in order to care for our guys.

& to everyone who's told us to "get some rest while the boys are in the hospital": you have GOT to be kidding. No, we don't get tons of rest--I have to get up every 3 hrs to pump, & N is amazing & gets up with me to help & clean up. We spend pretty much all day in the NICU next to our babies, not bc we HAVE to, but bc there is no where else we want to be. No matter where we are or what we're doing, my heart & thoughts are with my sons, & it is far more stressful to be away from them. Anyone who thinks that NICU time is better spent in mom & dad staying home & "getting rest" has never had a child in the NICU.

&, no offense here, but I feel that no one has any right to make demands of us right now. We will NOT be accommodating any one's schedule but Val & Conrad's. period. They are OUR boys. Mine & N's, & no one has fought harder or loves them more than the 2 of us. No one wants them home & healthy more than us, but we will NOT rush them or put them at risk by trying to speed things up for selfish reasons. All we ask is that everyone be patient & make no demands or requests of us right now. My mom has done nothing but help, & has never questioned or doubted us or our judgement when it comes to the boys. She hasn't expressed disappointment or complained or asked anything of us, but she is the only one.

Sigh. I really needed that rant. If you know me in real life & read this-- don't be offended, just cut us some slack. We're doing our best.