DAY 11: JULY 17, 2008

Today is a week since we got the confirmation that Finn has Down syndrome. A friend wrote to me about the grief she experienced in the aftermath of a devastating event in her life:

I remember . . . being completely irrationally mad that the sun was up. I wanted a physical demarcation that the world was different because my world had fallen apart. I couldn't believe God or the sun god or whoever was in charge of the sunrise and sunset would keep going. I couldn't believe that people just went about their lives as normal - they went to work and the store and movies and acted like nothing was different - I couldn't even remember normal and they were all living it.

Nine and a half years ago, my dad died very suddenly of a heart attack at the age of 51. I felt, and even wrote in my journal at the time, almost the same exact words: how can the earth still spin, and the sun still rise and set, and people go about their normal business? Don't they know that the world has changed with his (my dad's) death? Don't they know that the world is crashing down around me?

Six months later my husband at the time, Kevin's dad, died of a drug overdose. I had filed for divorce 2 weeks prior to that, but we had been married for 12 years, and he was the father of my son. I felt that same crushing, claustrophobic grief.

I feel it now. In a different way. There has been no death . . . or maybe there has. The death of the baby I thought I was going to have, the death of the dreams I had for him. I know life will go on and we will all adjust to this new reality - and it's not that I wish I had a different baby, I just wish with all my heart that I could go back to conception and take away that extra chromosome. I wish I had Finn, without the medical and genetic issues. I wish I could take for granted a "normal" future for him, and - selfishly, for me and for the rest of our family.

***

Today was a day of ups and downs. I got to the hospital at noon, in time for Finn's scheduled noon feeding. The LC (lactation consultant), Mary, was waiting for me. She was wonderful. She spent most of the afternoon with me. After much struggle, I was able to get Finn to nurse from both sides, but he only took about 10 ccs total (the nurse weighs him before I nurse and after on a special "breastfeeding" scale that measures minute amounts). At his 3:00 feeding, I actually got him latched on with a lot less fuss, and he took a full feed: 25 ccs. So that was great. I stuck around for his 6:00 feeding as well, and it didn't go so well. I couldn't get him to latch on. He didn't really fuss much, he just didn't want to wake up. Mary, the LC, unfortunately, was not there by then to advocate for me. I say "advocate" because the nurse would only allow me 10 minutes to try to get him latched on and nursing, and if it didn't work within that 10 minutes, I had to hand him over so she could give him a bottle. If the LC had been there, I know she would have bought me some more time. It was stressful being on a time limit like that. He did end up taking a full feed from the bottle, but still, every nurse we've had for the last few days has continued to threaten a feeding tube in his nose. I don't want him to have a fucking feeding tube put in his nose and down his throat. It's just one more thing that will traumatize him and exacerbate whatever oral aversion he already has. I left the hospital feeling just drained and defeated.

Everything is about numbers, and I'm sick of the numbers. Finn has to eat every 3 hours. He has to take 25 ccs at each feeding (this amount is increased by 5 ccs every 12 hours). He has to pee every 3 hours, and his diapers are weighed each time he is changed, and each diaper must weigh at lease a certain amount to be deemed "good." He is weighed before and after each time I nurse him. He has to take each full feeding within 30 minutes. I am only allowed 10 minutes to get him latched on and nursing. The freaking napkins he dribbles milk on during feedings are weighed so the amount can be subtracted from how much he took for a feeding.

Here's the truth: he is no longer "sick." His incision has healed, and everything indicates that he's healed on the inside as well. He has been taking nutrtion by mouth for 4 days now, and there has not been a single incident of him upchucking or having bowel upset. He is peeing and pooping like a normal, healthy newborn. He is maintaining his own body temp. His blood is absorbing plenty of oxygen from the air he breathes on his own. He is no longer on antibiotics. His heartrate and blood pressure are normal. His respiration is normal.

Being in the NICU is not keeping him alive. The only thing left is for him to grow and thrive and to do that he needs to eat. We can do that at home. In fact, we believe he will be able to do this better at home than within the strict schedules and protocols and limits of the NICU. If I can get him home and put him to bed with me and nurse him on demand around the clock (which is what I did with all my other newborns), I believe with all my heart that we can make this happen. As long as he is in the NICU, I can't be with him all the time. I can be there for about 3 of his daily feedings, and the time limits they set are too stressful. And how can all the crap he's still hooked up to not be stressful for him? How can he not feel my stress when I'm there trying to get him to nurse with people hovering and watching the clock? I just need the opportunity to feed him and take care of him where we both belong - at home.

This whole ordeal has taken a toll on the entire family. Thank goodness Michael and I are united more than ever, because I could totally see how a situation like this could tear a marriage apart. But the kids are suffering. Kevin is angry, just angry. Joey is emotional - more than any of the others, he is getting lost in the shuffle of all this. The twins are more whiny than ever. Lilah . . . well, she's still her good-natured self. But our whole family is suffering at the upheaval of having Mom and Dad constantly running to and from the hospital, and their baby brother isn't home where even they know he's supposed to be.

Here's a concept: how about if we break him out of the joint? We talked about it today, Michael and I, about all this stuff, about why it would be better for Finn and for me and for our entire family to have him home, about why leaving him in the NICU doesn't even make the most sense at this point. So Michael made his usual nightly visit to the hospital tonight, and he took Finn's carseat with him. I told him there's no way they would release him tonight, but his optimism made me feel hopeful. He told Finn's night nurse that he and I will be there at 11:00 a.m. tomorrow and we want to meet with the doctor and see about getting Finn discharged.

Stay tuned.