Playing Catch Up

Everytime I go to the NICU I catch myself holding my breath a little bit. I anticipate that when I walk in there things might not just be business as usual, not that there's any such thing really. In this situation you hope that when you get there all the numbers on the monitors will be numbers that allow you to exhale. You get conditioned rather quickly to different sounds and the energy of the NICU. Basically you walk in, you may or may not drop off breastmilk, you assess the ringing bells and find out how your baby is doing. My first source of information is looking at the babies and checking their monitors - pulseox, heartrate, resps, temperature. Once I'm satisfied with those numbers I find out who their nurses are that shift. We talk about any new developments, have any machines/medicines been changed? Have they been desaturating? (desaturating = pulseox drops, adjustments and support is given until it's back to normal and can be maintained on their own). Then I just kind of hang out, sometimes I lay my hands on them or let them squeeze my pinky but I get nervous to open their incubators because it can make their temperature fluctuate and at the same time I want to comfort them and human touch is so crucial I feel. When my spirits were down the only thing that could make me feel better was hugging Adam. That's pretty much my cure-all. :) Then I chat with them and know in my heart that they must recognize my voice. I worry that they're not together anymore and I talk to them about one another. I repeat how much Daddy and I love them... Our babies are almost the smallest ones in the NICU right now and looking through websites 0-3 pounds is apparently "micro preemie". Other parents can hold their preemies and feed them. That is a day I can't wait for. For now we just watch and talk and touch with caution.

To catch you up to where we are tonight - So far Lucian started out on blood pressure medication but no longer needs it. They both go on and off the UV light depending on their Bilirubin levels. I was able to change Lucian's diaper and he had his first bath on April 10th. He was sleeping on his tummy, one arm above his head, one leg slightly bent, just like his mommy and daddy. (I was worried about the sleeping on the tummy because all babies should sleep on their backs to prevent SIDS but they are being watched 24 hours a day so I was reassured it was ok). The night of Easter Sunday we went back to visit (I was discharged late afternoon that day) and Emma-Sky was no longer intubated which is huge. She was always at the lowest setting in terms of how much oxygen she was receiving (21% is the absolute minimum before breathing on your own) and they give her caffeine to stimulate her so she doesn't forget to breathe. Lucian is at 23 or 25% O2 settings so far. We stayed with Lucian for a bit and were happy to see that his levels were stable and he looked comfy. He looked bigger to me just from last night to today.

When we went over to Emma-Sky they were doing an echocardiogram on her and we were all wide-eyed and worried, far beyond holding our breath. I found her nurse and asked what was going on and she reassured me that this was just a routine procedure, that they check their hearts, etc all the time. Exhale. Turns out she's doing very well. They were looking to see if a flap was closed on the heart. The flap doesn't allow oxygenated blood that needs to be used by the body to sneak back in. Hers is closed. Lucian's has not closed yet so they want to wait to see if it closes on it's own. If it doesn't close on it's own they will give him medication to close it (If round one doesn't work they usually do 2 rounds if need be, sometimes 3) and if that doesn't work they wll have to surgically close it. Full term babies flaps close when they take their first breath usually. Ideally I hope it closes on it's own very, very soon. I think it needs to close within ten days of birth before they will try the medication.

I wanted to catch up with the doctor today and discuss this but a little baby, I think just born, was struggling and I'm not sure what the outcome was yet. In the time we were there one person was working on him/her trying to stabalize the pulseox. By the time we left I was practically shaking, there was a team of at least 8 people surrounding the baby and his/her pulseox was 40. So that you can understand the gravity of the situation let me explain what a number like 40 means. Lucian had a few episodes while I was there the night before last where his pulseox kept falling below 60. It was the scariest night of this whole experience so far. It happens so quickly and right before your eyes the numbers tank - 91, 88, 86, 84, 82, 79, 68, 64, 62, 58, 55.. and now your baby is blue and your ringing your hands, "please, please, please come back up". Even when they were giving him 100% oxygen vs. the normal 23 or 25%, it wasn't working. Then they suctioned him which I think did the trick. This happened three consecutive times. Then I had to convince myself that he was stable for long enough that I could "comfortably" go upstairs and try to shower and pump and get back down there. Nothing comes quickly right now though because I'm trying to recover, walking ever so slowly, stapled closed with 15 heavy duty staples. It took two hours to shower and pump and get back to him. Thankfully nothing happened in all the time I was gone. I guess he just wanted to test out how strong my heart was while I was there. ;) Once the pulseox number reaches a certain limit the alarms start to sound - that's the ringing bells I was talking about earlier.

We hadn't been there very long this afternoon but I told Adam that I couldn't take it anymore, it was so upsetting to see this baby go through this and they were talking about bringing the mom down in a wheelchair. My heart was breaking right then and there. I didn't think I could see her or witness anymore of what was going on. The doctor was asking for something to be messengered down to him in the next minute, he was frantic and actually said "I need help here." It is literally a matter of life or death when something like this happens. We went straight to the chapel and prayed, biting my lower lip choking back the tears. I am so scared that when we go tomorrow that baby will not be to the left of Lucian's incubator.