Wednesday the 28th

I woke up this morning frustrated. It was a matter of communication. Nurses told me that things like EEG's would be scheduled and times that I could call to get scheduling matters resolved. We'd call and there was no organization to it all. Thank God Dr. Korte was back on today and we still jive like we did last week. She listens to me and accommodates in spite of the nurses disapproval.

Ollie got his IV pulled out of his arm. He really only needed it for the platelet transfusion and it was driving me nuts that he had a full arm and a full leg totally immobilized. So his arms are free and we can move around now.

He has his IV fluids and lipids (IV nutrition) weaned down to 10 from 16. He is taking 35 ml of milk by his feeding tube now. The goal is 45ml. As his milk goes up, that IV fluid/lipids will go down. Obviously he needs to be totally on breastmilk via breast or bottle for him to go home, so getting him on just milk even via his tube is a huge accomplishment. His blood sugars remain a lovely stable number.

His BP has been climbing a bit. They are monitoring it for now, and he may end up on High BP meds.

He is adjusting to his anti-seizure medication and sure is waking up and looking around today. He is tracking with his eyes, and I can tell he actually can get mama into "focus" and see me. He saw daddy today too, and when Will moved a foot right or left, Ollie would turn his head and follow the voice and shape of dad. It was pretty cool.

His oxygen issue got some assistance today. They put him on a special oxygen that is humidified. It's the same nasal tube as before, but a different oxygen. It's helping because his oxygen is down to 30% instead of 35%. He's been sitting at 35% for two days. Oxygen is another one he has to get totally off of to go home.

He's up to 9 pounds 1 oz.

He is seeing the speech lady every day who is helping work his mouth muscles. She will see him every day and set little goals for us to work on with the hopeful end goal of walking out of here breastfeeding. I'm willing to take him home on breast or bottle. We can always adjust things at home.

He also is seeing the physical therapist daily who gives him his "play time" where he gets to stretch and work his muscles. He just sighs and loves getting his body moved around. It's really sweet.

He got an Xray today because his "central line" which runs up a vein from his ankle to his mid abdomen where there is a HUGE vein-had pulled out about 3 cm. The xray showed still proper placement so no one had to mess with that one.

His EEG got moved to tomorrow at 3 p.m. Dr. K was sweet enough to wait on his phenobarb meds which make him very drowsy until after the EEG. She thinks there is no way it's making him drowsy. That drug doesn't even wear half way off for 96 hours. But she acknowledges that I sit at his bedside day in and out and I see what I see. She never argues with what a parent says they see, wheather she agrees or not. I really admire her for that.

Ollies MRI will be Friday at 1pm. We likely won't get results on that until Monday.

Add to this schedule speech and physical therapy on top of the testing and Ollie needs a secretary!

I'm thankful that he has a couple really good nurses on tonight, and my number one favorite nurse (who is also an alternate head nurse) is in the room caring for another baby. So-he will be taken excellent care of tonight. I can leave a little earlier than 3am and get some extra sleep. I'm aiming for midnight at the latest. Trying really hard to take better care of me in the sleep department. So much to do-so little time. It kills me to be here and not be by his side 24/7. I am here 12-15 hours a day and yet I am actually cribside probably 11-12 hours a day. Between shift changes and me stopping to eat and pump...yeah.

I got to hold him skin to skin again today. For a long time...like 2 hours. The last time we moved him onto my chest, he nuzzled me. Just for a second, he snuggled into me and showed some interest in maybe feeding. It was like 3-5 seconds, but a strong signal that's really good. It reassures me that he really just needs to wake up more. And he is waking up more, a little more each day.

We also got visits from K and H (midwife assistants) and it was sweet and encouraging both for me and Ollie. I can't wait to have everyone over to welcome Ollie home someday. What a sweet ending it will be for us all. And a beautiful beginning to a new chapter in this amazing story of ours.

Also today my friend Kristen had a hard time. Her baby whom was delivered at 25 weeks had to go in for emergency heart surgery. It was very scary, and I was glad to get to be there for her. I caught her crying and got to give her a huge hug and reassure her. We prayed together and talked and her family showed up. Baby Grace pulled through with flying colors and we got to "hurray" together too. She and I were talking today and she just shook her head and said "Randi, how am I going to keep this up for months and months?" She just looked exhausted. I said "you're not. You're going to do it for today. That's all we have. Today. This of all places gives no promise of any tomorrow. But tomorrow, you will get up and you will do tomorrow then." She nodded with tears in her eyes. Today I got to be there for her. Tomorrow she may have to be there for me. Family away from family in a home away from home...all for the love of these tiny little souls that own our hearts.