It’s a very difficult thing to explain to other people why you aren’t up at the hospital for hours a day with your newborn child when they are in the NICU. I’ve had quite a few people ask me if I’m “living at the hospital” and how often I’m able to get back home to see my other kids. I can tell you, in a twisted way that I’ll try to explain, that if Genevieve or Adessa were hospitalized I would be at their side 24 hours a day. It’s not a situation most people can imagine. There’s a part of me that would love to sit at his bedside, talk to him, and be able to touch him all the time. On the other hand, I have 2 other children who need me to be at home with them. We have a 45 minute drive to the hospital, and honestly… there’s not much we can DO for Caden right now. He’s heavily sedated so that he won’t fight his oscillator and kangaroo care is not an option until he can grow more stable. (Kangaroo Care involves skin-to-skin contact with your baby and is great for them to regulate breathing, help with weight gain, and just that human touch speeds up their care).
Right now, I just grow giddy when we are able to get there around 8 o’clock at night. Because then I can change his diaper, lift him while he’s weighed, and lift him again while they change his bedding. He can’t come out of his isolette, sometimes just finding a place to lay your hand is difficult when he’s on his back and has IV’s coming out of every limb. I’m just grateful that both IV’s are now removed from his head so that I can lay my hand there. Even then though, when Caden is having a bad day, you’ll see that touching is too much stimulation for him and you’ll have to remove your hand as his oxygen levels drop.
It’s also a stressful environment. Because he’s still in the critical nursery, we have to leave (very quickly I might add) when other babies are freshly admitted, we constantly see teams of specialists and doctors gathered around babies bedsides discussing life-and-death matters. X-ray machines are being wheeled in and out. The noise level surprises a lot, constant beeps, alarms, the sound of oscillators. The other night, while Daniel and I were there, the baby next to Caden actually let out a cry. It was the most shocking, foreign sound that I can explain. Babies don’t cry in that part of the NICU. They are hooked up to CPAP’s, Vents, Oscillators, feeding tubes all down those tiny throats which stops any sound from coming out. It was heart-wrenching and yet the sweetest sound in a way.
So it’s not a surprising situation for us to see ourselves as the only parents in the NICU at any given time. Even though there are now 6 babies in there, I have seen only 3 other sets of parents for a brief time as they come in to see their baby. Usually newly admitted babies, with their mommies still in wheelchairs and hospital gowns. The idea of “visiting” your baby is a concept that I’ve found many have a hard time grasping. But, quite frankly, that’s what it is. Daniel and I know that right now, Caden is in the best hands possible and there’s not much we can do in his daily care. All those nurses, doctors, specialists can provide our son the care he desperately needs. Caden reacts to our voices, our touch even, but we can’t give him the care and life support he needs. Until he’s out of the critical nursery and off his oscillator our ability to do things for Caden is severely limited. So we visit him, we get our daily updates, and we wait.
On to the update, Caden had a very very good day yesterday. His oxygen levels are in the 30′s, room air is about 21% in case you were wondering. He was actually awake and opening his eyes when we visited him! That was a first, we’ve gotten little peeks before but that was the most awake we’ve ever seen him. Big day for Daddy as well, Daniel got to hold Caden while they changed his bedding. His little digestive system is finally working, he went through 3 diapers while we were there. His echo yesterday came back excellent, and though he’s lost some weight (he weighs about 2lb. 6oz. now) we’re hoping that’s just because things are finally moving through his system and he’s losing some of that extra fluid. He’s back to a regular feeding every 3 hours, taking in about 9 cc’s but he’s only digesting about 5 cc’s at a time. We’re keeping our fingers crossed that Caden will be able to maintain these oxygen levels and maybe be moved on to a regular ventilator soon.
Caden’s echo came back perfect, there’s no sign of pulmonary hypertension. They lowered his nitric oxide from 20ppm to 15ppm, they’ll keep him on that for 3 days and we’ll see how that weaning goes. His morphine has been turned down some, they’ll watch for any withdrawal symptoms such as jitteriness, etc. but he seems to be doing well right now.
I can hardly believe that Caden is 26 days old all ready! Genevieve’s entire NICU stay was 22 days, so the fact that we are over that is kind of surreal. Last night we picked up my brother from the airport so we took him along with us to see Caden. Caden’s eyes were open the entire time, as you can see from the adorable picture to the left! And Daniel was able to lift Caden for his bed change without any blankets. Daddy really enjoyed that. 
Caden’s oxygen levels have been in the 20′s and 30′s, excellent news. They tried lowering his nitrix oxide last night, and he was doing good on that, then he started having an 18 point discrepancy in his oxygen levels on his foot and his hand. That was right after mommy and daddy left so we’ll attribute it to that. They had to bring him back up to the full amount. They are also starting to try to lower his morphine levels, since he’s dependent on that so it will be slow.
