DAY 10: JULY 15, 2008

I fell into bed last night around midnight without updating here and I tossed and turned all night over it. Writing here has become such a calming part of my routine, that I hadn't put down the day's events felt like something was missing.

Here's Finn's crib - they added a mobile to it today:



Sleeping, as usual.


Feeding time. This is Prunella (Prinella?), our nurse for today. She's my age, from Sweden and I just fell in love with her. She's my favorite nurse we've had so far.

He's tolerating feeds very well - no reflux issues, no blood in his poop or anything, everything is going through him properly, so that's all very good news. They've increased his volume from 10 ccs per feeding to 15, and as he continues to tolerate well, the volume will be increased by 5 ccs every 12 hours. They want to get him up to about 50 ccs every 3 hours, plus he needs to show appropriate weight gain, before they'll discharge him to come home. It is feasible that he could come home by Sunday or Monday. I'm trying to be optimistic but realistic about this.

The attending physician removed the steri-strips from his incision today, and voila:



I'm really amazed at how well it has healed already. The surgeon used dissolvable sutures, but I still expected to see a big scabby gash when the dressing was removed, but it actually looks really good.

Notice he still has his umbilical cord stump. I'm kind of surprised he hasn't dropped it. I asked the nurse to post a sign in his room alerting whichever nurse is there when he does lose it to please save it for me. I've saved each of my babies' belly button stumps.

Daddy and his boy-


We got a call at home from the cardiologist this afternoon so we could get clarification on Finn's heart issue. So here's the deal: it's not that we were given inaccurate information, we were just not given complete information - which to me is almost as bad. Finnian was apparently born with TWO holes in his heart - a PFO (??) and an ASD. Th PFO did close. The ASD has not closed. We will go back in 3 months for another echo so it can be monitored.

***

I was also visited by our case worker today. Yes, we have a case worker. We also have a social worker, and a psychologist, and a feeding and development team, and a surgeon, and a cardiologist, and a lactation consultant, and a myriad of nurses. Anyway, the case worker came to see me today to give me all the information on how to get "early intervention" started for Finnian once we get him home. Early intervention . . . it's a term I'm hearing over and over. I asked her, "Really? He needs intervention even as an infant?" She said, "Yep, he'll be going to baby school." I started crying. It's like this effing club we're being forced to join. I don't want to be a member. Can't I just decline and pretend we have a normal life? She was not sympathetic, just very matter of fact. "You want him to be the best he can be, don't you?" Yes, of course. So she will be making the referrals for us to something called Regional Center, where they will come out to our house and evaluate Finn in a few weeks and come up with a plan for whatever therapies he'll need over the first 3 years of his life. She also made a referral for a Public Health Nurse to come to the house and monitor Finn's physical well-being on a periodic basis. We can decline that if we want. I'm not sure that's something I think is necessary or welcome.

***

I feel so completely frightened of all this unknown stuff. This is all totally foreign to me. I've never had any personal experience with anyone with a disability . . . and to be perfectly honest (and I feel ashamed admitting this), people with disabilities have always intimidated me. The closest I've come is the close friendship I developed for a while with Michael's good friend who is deaf, and his wife, who is also deaf. For a period of a few years, the four of us spent a whole lot of time together, and I learned how to communicate with them - a tiny bit of signing, but mostly just getting to know one another's gestures, and yes, even note-writing back and forth. I came to feel perfectly comfortable with them, but that's the closest I've come to dealing with anything remotely like what we're facing now. Michael, on the other hand, has had years and years of dealing with people with all kinds of disabilities - that was his first career, so to speak, working as a sign language interpreter which put him, of course, with deaf people, but he also did years of work with blind people and people with all kinds of other disabilities - CP, autism, brain injured, etc. So this isn't so completely foreign and frightening to him I think.

***

So, the best news for last. I arrived at the hospital around noon, the plan being that I would be there for his scheduled feeding and attempt to nurse him. Sue had suggested that I try using a nipple shield since he seems to respond to the sensory input he gets from the rigid bottle nipple. So the nurse got me a nipple shield and I tried that. It didn't go well. He wouldn't latch on and just got upset. They'll only let me try for 10 minutes or so because they don't want to wear him out so he won't take a bottle. They know how important it is to me to get him breastfeeding, and the whole staff is very supportive of that, but practically speaking, they're not going to wait until he's breastfeeding well to discharge him from the hospital. The main goal is just to get him taking full feeds by mouth and get him off the IV. So I tried nursing him, and it didn't go well. I hung around for his 3:00 feeding and tried again. No luck. I left the hospital feeling sad and discouraged, but telling myself it's way too early to give up, we can still make this happen with time and patience.

Alycia came over after work to stay with the kids and Michael and I went and grabbed a quick dinner and headed back to the hospital. I wanted to be there for Finn's 9:00 feeding. We got there, got settled, and I put the nipple shield on, really expecting more of the same unwillingness from Finn, and . . . he latched on! He stayed latched on! He nursed!! He nursed for a good 20 minutes!!!!!!





I hesitated posting pics here, but I figured, hell, I've never been shy about breastfeeding in public anyway, so what's the difference? You've seen one boob, you've seen them all, right ;)

Anyhow, I can't even express how much this made my day. I feel so hopeful now. I know we still have what will probably be a long road ahead of us as far as breastfeeding, but this is a start. It's a start.