Progress not Perfection

Today has progress. That's a good thing. Today Oliver has weaned pretty much down to room air. He still gets it blown up his nose by a candula (fancy word for nose tube). Once he can deal with that and be stable enough, then he can have the nose tube removed. It's taped to his face and tightened behind his head like a pair of goggles. It's irritating.

The feeding tube he has in is making him gag today. Alot. That means that all the little nerves and reflexes in his mouth are waking up and being activated. The feeding tube has to be replaced every seven days. It expires this Saturday. The speech therapist is going to write a request in his chart to have the tube put down his nose into his belly so his mouth is free to work on feeding. If he gets too gaggy before then, they will move it earlier. But the nurse is pushing to have it wait. I am choosing to choose my battles. If he gags and barfs then I guess they will have to move it and clean up baby barf. Their bad.

We are practicing "oral stimulation" every feeding about 15 minutes before his feed-which is every three hours. The nurses aren't so great at keeping up with what the therapists request. So, I do it myself. All the little triggers that cause a baby to root and want to feed are around the lips and cheeks and there's a couple just inside the mouth. We are just gently stimulating those areas so the muscles wake up and build strength. Ollie is responding VERY well. He is also falling in love with his paci.

He really is coming more and more awake and alert. I am wearing a tank top today and held him on my upper chest where there is skin. He was belly down and I had scooted down in the chair so I was more horizontal than vertical. He nuzzled around and grunted and snuggled. Once he settled down a little bit I started talking to him and he opened his eyes and looked for me. He lifted his head off of my chest and searched for my face! His eyes are brighter every day. He is still very bruised and his eyes are bloodshot around the colored part, but I see more and more every day when I look into those eyes. He is starting to believe that life may be worth checking out after all.

His feeds are being increased every third feed by 5ml. His goal is to keep going until he hits 70ml. So, about 2.5 oz. I am making twice that every three hours...so he isn't going to be under fed by any means. His IV fluids/nutrition got turned all the way down to 5. (started at 16)The goal of course is for him to not need the IV stuff and just get all his nutrition from mama's milk. His blood sugar did drop a tad though and they turned the IV back up to 8. Everything is done by lowering the "help" and seeing if he handles it. I like this form of care. I do not like the doctors that believe he can't handle it and just don't test him on anything. It gives him no room to show off. And he likes to show off. They said he would throw up and not tolerate feeds, and he's a moose. He has done nothing more than a hefty burp. They said he'd need to be on oxygen for weeks, and he is about to be totally off of air. He fills his diapers with much joy...no really...he grins when he does it. And his cry grows stronger and louder with each shift change. He lost some weight and is now 8 pounds 15 oz, but, he still had a lot of swelling so that's not bad. His little fingers are now wrinkly and skinny like a newborn should be. His right leg is still pretty swollen because it is splinted and immobile due to the central line that runs up it into the inferior vena cava. (Big fat vein in the belly area).

His temperature goes up and down. It tends to hit 99 here and there. It was 99.5 this morning and they are watching it very closely. I pray he doesn't get infection...which is so common in the hospital. And I don't dare explain or even discuss MRSA...I'm sure you've all heard of it. He's doing so well and an infection would set him back so far.

Right now Ollie is getting his EEG done. We get results tomorrow. This will show if Ollie has signs of brain damage. His MRI on Friday will show what areas have been damaged, as well as if he has any brain bleeds or areas that were damaged by say a stroke. Those results will be in on Monday. We continue daily with speech and physical therapy until he comes home.

I'm tired today. My humor is a little dry. I want to snuggle up with my baby and take a long long nap. But, holding baby and sleeping is not allowed, so I battle my tiredness and snuggle my son while he sleeps in my arms. I do his therapy and change his position and tell him how much I love him and how bad I want him to come home. He tries every day with all he has. I saw some parents this morning, we shared an elevator up to Ollies floor. They had an empty car seat, a camera in hand and grins on their faces. They were going home today. It was a sweet thing to see. Babies do go home from here. I won't be here forever.

I keep dreaming of the day I bring Ollie home. Dreaming of him free of wires and tubes, free of loud beeping and careless voices shouting around him. Free to explore and seek out things around him without being disturbed. I am grateful, don't get me wrong. I know the very things that I can't stand and want him to be free of are keeping him safe and alive. But this scene goes against every maternal instinct in me. Saying goodnight and driving home alone is the absolute worst. And the more alertness he has, makes it harder. I have to leave him while he is awake sometimes now, and that just flat out breaks my heart. I can't do it without leaving the NICU crying. It's so wrong. My heart longs for the day I don't have to say goodbye and leave him in someone elses care. Until then, I take one hour at a time...put one foot in front of the other.