Monday, October 27, 2008


On Friday afternoon, after 53 days in two NICUs, my baby boy breathed the outside air for the first time.

Off the hospital monitors and dressed to go home.

Heading to the car in the NICU buggy.

We are happy. We are exhausted.

We are home.

Wednesday, October 22, 2008

on our way

People! Listen!


The doctor told us this morning that once we have our training on how to care for the G tube (which is tomorrow), we can TAKE HIM HOME.

Discharge is planned for Friday afternoon, as long as he doesn't do anything silly between now and then. We are not telling him he is going home, because whenever you do that, something rotten happens and the kid ends up staying. No, thank you. It is time for us to wave goodbye to the NICU and be a family again.

Saturday, October 18, 2008

it's the little things

Baby boy is on breastmilk already! As of this morning they discontinued the Pedialyte and started him on breastmilk again. I couldn't be more thrilled at the speed of his progress right now. He is only getting 5 ml this morning, slowly infused, but it will increase by 5 ml each feeding until he eventually gets back up to a reasonable level. If his system tolerates it well, they will do bigger jumps.

He is also off morphine now, meaning hopefully one of the IVs will come out. The other will be decreased until he is on full feeds, and then will be discontinued.

His nurse also told me he is off the warmer for good, dressed and wrapped up, and will be going back into a regular crib.

They are baby steps, literally, but feel like giant leaps to me right now.

Friday, October 17, 2008

just a little update

For those interested in the medical happenings, our son is resting relatively comfortably. He continues to receive tiny doses of morphine as needed, but he has not needed much. This morning, 48 hours after surgery, he is finally being fed, though it is just Pedialyte. They are literally administering it drop by drop through the GT and it is agonizing to watch it drip, knowing he is hungry and that's all he can have.

In a couple of days he will go to a very slow feed of breastmilk again, and hopefully by next week we will begin bolus feedings so we can start thinking about discharge.

We haven't been able to hold him yet, as he is tethered to the pump that administers the Pedialyte. That will continue on a constant, around-the-clock drip for now. Plus he is still in pain and I wouldn't want to pick him up and hold him if it means his abdomen would be scrunched up.

As for me? Well, I am doing my best. I am angry and confused and hurt and sad, mostly because my little boy has to suffer. I'm tired...the kind of tired where you don't even fully realize just how tired you are until you lay down in bed at night, flip on the news, and miss it because sleep comes instantly. I'm straight-up worn out and just want this all to be much as it can be. This morning Hubs and I went to training for CPR and to learn how to use the apnea/bradycardia monitor and suction machine our son will come home with, a real reminder that things won't be the same around here for the foreseeable future.

I guess that's it for now. Just muddling through as best we can.

Thursday, October 16, 2008

post op

My little man had his surgery yesterday morning. It went remarkably fast, and he came through great. No problems with anesthesia, and the surgeon said his anatomy is normal so no complications when they opened his abdomen. We were able to be with him right up until the anesthesiologists took him away, and we rejoined him immediately after he returned to the NICU. As for me...well, I managed to get through using only 3 tissues, so I guess my crying was minimal.

I went back to see him last night, just to check on him, and he was laying splayed out on a warmer, his middle covered in bandages, moaning and crying and startling a lot. He is used to being swaddled and held, so this is something of a surprise to him. The nurses were giving him teeny doses of morphine every couple of hours to keep him comfortable, but he didn't look comfortable to me.

They will start feeding him again, slowly, slowly, starting tonight or tomorrow. It is the first step toward bringing him home. I might be able to hold him today when I go in. I sure hope so - I think it would be a great comfort to us both.

Tuesday, October 07, 2008

Properly practiced, knitting soothes the troubled spirit, and it doesn't hurt the untroubled spirit, either. ~Elizabeth Zimmerman

Oh hi.

I am so exhausted. When I finally lay my head down at night the room spins. Our son has now spent all of his 5 weeks of life in the hospital, and it won't end soon. His surgery is still a week away (next Wednesday the 15th), and then there will be recovery, and our education as to how we care for him. And the bills have just started to roll in. Heaven help me.

I don't want to drive back and forth to the hospital even one more stinking time. And have I mentioned that the route to the hospital takes me right past the cemetery where my daughter is buried? How fun is that? But I can't skip even one day or I wouldn't be able to sleep at night. I get about 2 precious hours with my son each day. The whole thing just sucks.

The knitting has not fallen by the wayside, believe it or not. I finished up a couple of sweaters before the birth, and since then I have managed two pumpkin hats for my two little pumpkins. Baby's is way too big, but Daughter's is a-ok.

Photo credit goes to my mom, who, along with my dad, took Daughter to a local farm last weekend. Thank God for my parents, without whom I would be totally dead right now.

Anyway, that there is the ubiquitous fruit hat, knit in Knitpicks Wool of the Andes (colors: pumpkin and fern) and the Knitting Pure and Simple children's neck-down cardigan with the knitted collar option, knit in Lion Brand Fisherman (color: nature's brown). For the record, one skein of that yarn is enough for this sweater in the smallest size (2-4 years, I believe), making it one of the cheapest heavy wool sweaters ever - about 6 bucks. Hey, I am stressed out and anxious beyond belief, but I am still frugal. I wish I could show the awesome wooden toggle buttons on the front, but all the front shots show her face and you all know how I feel about faces on the blog. They're gorgeous, though.

Time to go pump breastmilk. Now I know how dairy cows feel. Sheesh.