Feeding. And also Faith.

Samuel is in hospital at this point primarily to deal with the feeding issues. From a lung perspective, he is doing great. The doctors are not weaning his oxygen requirements past the 1 litre/hour that he is currently at because they want the O2 to help him grow but they don't think he needs that much for respiration. He is getting stronger all the time and physio and occupational therapy are happy with his progress here.

A few days ago, Samuel started "bolus" feeds. He went from getting a steady drip 24 hours a day to having an hour on and then an hour off the feeding pump. We watched to see whether his tummy could accommodate the doubled volume. He did fine so on Thursday night he went to an hour on and two hours off. What he would have gotten in three hours he was now getting in one; again, he tolerated the increase in volume just fine.

For the first time, I heard my Samuel make hungry noises. I remembered that sound from my other children, the cry that is a little different from the other cries our babies use to communicate. I offered him his soother and he did just as my others would - sucked desperately and then spit it out in frustration. Samuel is becoming more like a "normal" baby every day.

We now are at the hospital even more so that we can feed him every three hours. As soon as he expresses hunger, we offer him a bottle and he takes as much as he wants. If we wait too long or he spends too much soother time first, he tires quickly and takes only a bit. If we time it right, he can take about a quarter of his feed by bottle before he tuckers out. Whatever he doesn't take is fed to him via his NG tube.

That Samuel is progressing so well with this is enormously exciting. The doctor told us this week to anticipate him coming home in late July. However, if Samuel continues to consistently feed and gain weight as he is, it is hard to imagine that we will need another two months in hospital. We are so eager to have him home and will get to "practice" with some home visit passes in the next while. We can bring him out of hospital for a couple of hours at a time to be in his home with his family. Oh my goodness, I can't believe I am writing that. 

I had a visit from the nurse with the HOME nutrition program on Friday. HOME is not actually capitalized in the title of her program but I like the way it looks and sounds. She introduced herself as the HOME nutrition nurse and I said, "Sam, did you hear that? She said HOME." I was a bit giddy using the word HOME so hopefully she didn't feel the need to call Social Work on me.

The nurse taught me about naso-gastric tubes and then I pulled out Samuel's old NG tube and put in a new one and learned how to check that it was in the right place in his stomach. Someday, Samuel can put a tube up my nose and into my stomach to pay me back. Okay, I don't really mean that. Bleh. Don't tell him I said that.

Oh my gosh. All this cuddling and gazing and smelling baby smells. Sigh....

In all this excitement, I have not lost track of the incredible grace of this experience. I still go to the sacred space down the hall from Unit 2. I sit in the quiet there and I hold my prayer beads and all that comes out is, "God, help me be the mother that my children deserve" and "thank you thank you thank you thank you." I wish I was a little more articulate in my conversations with the Creator but, most days, this is all I've got.

One of the moms I met in ICU came to say goodbye before they took their son home this week. Baret was a healthy, busy three year old until he started having massive seizures. He spent his fourth birthday in ICU in a medically-induced coma to try to stop the seizures and brain swelling. I remember seeing them in the room across the hall from Samuel and feeling deep resonance with their experience despite our different particulars. Like us, these parents were told that their child would likely die. Like us, they feared and prayed and cried. Like us, they discovered what it was like to get your baby back.

This mom and I know very little about each other but what we do know is of the most intimate nature. We cried together and understood things that didn't need to be spoken. We are forever bonded by our miracle boys. When I saw Baret a couple of weeks ago, he was in a wheelchair, had a lot of muscle tremors and just a few words. When he and his mum came to visit a couple of days ago, he walked into the room with only a bit of a limp. Daniel, Baret and I had a conversation about his Spiderman and Shrek stickers. Baret giggled at his ability to make Daniel laugh by tickling his feet. I am so moved to be privy to that kind of amazing beauty and spirit. God bless sweet Baret and his mum and dad and brothers.