Baby steps

This morning I arrived at 10am after 5 hours sleep, and nothing had changed. The pic line was still sitting at 3. 18 hours after our set back we were still just stagnant. I asked the charge nurse for an immediate visit with Dr. K. Within 20 minutes she met me at Ollies bedside. I told her that I was very frustrated. Ollie is not a preemie, he doesn't need the strict regimen of 80ml of food every three hours for exactly half an hour. I told her he was nursing and I wanted to nurse him exclusively and on demand. You can't make a baby fit into a routine like that. If they could make him poop on demand they would...wait, they were doing that to another kid with suppositories...well that's another rant.

So Dr. K agreed to nursing on demand! Big HUGE accomplishment in an ICU. She asked where I would stay and how I would feed him at night, and I should give him at least a bottle so the nurses could...-I cut her off- I said that I have plans and support to take care of me, and that I was not her patient, that I'd rather focus on Ollies care. She just kinda gave me a blank look. So I asked what the plan of action was. She told me that since his hormone Cortisone was low that meant his adrenal gland was not producing enough to keep his sugar stable throughout the day. She doubted he'd do it on just breastmilk as he had the drop in sugar while he was on the rice cereal fortified breastmilk. SO...she ordered a STAT ultrasound of his adrenal gland. Officially-I know nothing, but unofficially I have seen the report and the radiologist hand wrote "kidneys and adrenals normal" so, structurally they are normal, imagine that. But there could in fact be functionally not normal.

Okay, I can deal with that. If they are not functioning normal then he will in fact have another drop in sugar levels and we will have to get him on some kind of hormone supplement. In the mean time she has cut back his constant monitoring of BP, sugars (heel pricks), temperature, etc etc to only twice per 12 hour shift! And--the two sugars that have been checked today have been high enough to wean down his pic line to 2. I hope and pray that by morning it is at 1 so we will have a full weekend of good sugar checks. If that is the case, I personally can see no reason why we can't go home monday or tuesday. If there is another set back then on monday / tuesday we will be getting him adjusted to a cortisol hormone that we can wean down in a couple weeks under a pediatricians supervision from home, not via IV here in the hospital.

So, it's Friday night. As I type my mom is rocking Ollie in her arms, holding him for the first time. In a little while after he feeds again I will sneak down to a warm bed that my hubby has made in the back of the vehicle right next to the parking attendant booth. I will snuggle up, cell phone in hand and take a nap. His nurse will call me when he wakes and I will go feed my boy. Over the weekend Will takes care of Ryan, the older boys are on visitation. Come Monday, all three kids will be home and we are unsure of a plan yet. Will is bringing me food in the morning for the day. I will have to run home tomorrow and shower, lest I get funky. But Will can sit with the baby while I do so. Will have to do the same on Sunday.

It's amazing to me how unfriendly the hospital is to a breastfeeding mother. Of all places where it should be encouraged and accommodated...apparently it's not totally unheard of. Speech finally made an appearance today, because they had heard through the grapevine that the baby was feeding. Good thing I didn't wait for them to confirm he wasn't choking...(thank you dear sweet Miss Kaleem for the firm encouragement to just feed my baby) Speech was just shocked. They also asked about where I would stay and what I would do. I told them about sleeping in the parking lot. She said a couple moms had done that before. One got a motel room up the street. Another parked an RV in the parking lot. I guess there's hook ups for that in one corner of the parking lot just for that reason. Funny how we just now get told these things...

So, once again we are on track. We have a plan. We continue to pray that Ollie can manage his sugars. So far, he has woken himself up to feed on demand all day. Sometimes he goes thirty minutes and just snacks. A couple times he has chowed down and then waited 2-3 hours to feed again. No matter how long, his sugar has been higher or as high as when he was on fortified cereal. Hopefully as the sugar IV gets weaned down he will be able continue to maintain his high sugar levels. We are so so ready to go home. Ollie is 16 days old today. I can't believe it's been 16 days in this hospital. It feels like an eternity. I can't wait to spend 16 days at home. Blissful home...I can taste it...

Ollie got a blanket today, donated from the "family life department"...a beautiful hand made quilt. It's quite large...and covered in trains. No one knows about my trains-except all of you. They don't know I pass the trains when I drive home and say silent wishes and prayers for the trains to carry to my baby who lives way down town. They don't know I lay in bed at night, without my little boy and hear the trains rumble by out the window, carrying his little baby dreams to my ears. Of the huge pile of donated handmade blankets for all the sick babies in ICU, they would grab one covered in trains for my baby.

We rumble on...only tonight, we are together...him and me...and no one to tell us "no"....
I ask you say a special prayer tonight for two nurses who have just blessed and supported our whole breastfeeding revolution, bending the rules for his sake. One is also the nurse who was by his side the hour after birth and transferred him from one hospital to another, her name is Carrie. She took pictures and kissed my head the day that Ollie first latched on. The other has been his nurse the last two nights and has requested him as her assignment every night she works til he goes home. She sat with me til 2 am talking about my fears and worries, letting me nurse him, and openly discussing his birth story with no prejudice, just curiosity and validation. She hugged me when I left for bed...her name is Christy. I hope God will just bless them both and fill their hearts. Without a good nurse by your side, somethings are near impossible. I know I will sleep tonight...my baby is in great hands while I rest, hands that are not afraid to wake me up and let ME come feed my baby. Hands that are loving and gentle. Thank you Lord for good nurses.