NICU Day 55: Back to ICN

Today has been a day from hell.

At 11 am, after several hours of breathing above the ventilator, they decided that Maya was awake enough to extubate. Orders were written, the respiratory therapist was called, and plans were made to give her first feeding post-surgery at 2pm. They figured she'd have 15mls, then 30mls at 5pm, and finally her 45mls at 8pm, at which time she'd be taken off the IV and moved back into TCN to be with Bobby. I called Peter with the good news and he told me he was on his way to the hospital from work. I went to pump so that I would be with her when they removed the ventilator.

Peter arrived at 11:45, just moments before the therapist. Soon, she and the nurse were scrubbed in and they pulled the vent. For a few minutes, everything seemed fine. And then Maya began to desat. And her heartrate plummeted. And suddenly, this perfectly pink, chubby baby, who has perfect lungs, began to struggle for every single breath. Her little chest heaved. Her lips turned more purple than pink and her skin was pasty white. Her little fingers were clenched into fists and her chest rattled as she tried desperately to breathe. Thinking that she might have some minor swelling in her trachea, the nurse administered a dose of epinephrine. Nothing. They decided to put her on CPAP, to give her throat a chance to open and the epi to work. Finally, she seemed to be doing a little better. I decided to leave her with Peter to go check on Bobby.

Fifteen minutes later, I get a text message: "Come Back". The chief neonatologist, the nurse practitioner, Maya's nurse, and the respiratory therapist are all working on Maya, who looks so small and fragile on the large table. Alarms are going off. The CRNP is bagging Maya, using a tiny baby-sized mask to breathe for her. Her tiny little chest caves in with each labored breath. Finally, the doctor tells us that they will have to put her back on the vent. And, as they use a fiberoptic tube, the reason why becomes crystal clear. Her trachea is swollen shut.

Normally, this is seen in babies who have been on vents for a long period of time. Either the tube used was too large when she was intubated yesterday and caused the edema, which then became worse when the tube was removed, or she just has a very sensitive body. They have no idea why; these are their best guesses. As they suctioned her, we saw blood in the tube. Her poor little body was just so battered and bruised today. I couldnt kiss it and make it better. I couldnt take anything away. I couldnt even hold her when she sobbed silent cries, unheard because of the tube protruding from her little mouth. I could only stroke her hair, hold her tiny hand, and kiss her forehead, telling her over and over how brave she was and how much I loved her. I have never felt a deeper anguish in my soul than being unable to comfort my child and knowing that I have to allow people to put her in pain in order to help her.

After she was reintubated, they moved her to the last pod in ICN. Her nurse stayed with her, as did we. She was finally stable and we were able to sit by her bedside and just hold her hands while she slept. At 3pm, they moved Bobby from TCN to be next to his sister. He just wanted to look at her the entire time. We had to hold him by her bedside and, if we tried to turn away or put him down, he would squirm and fight us until we moved in such a way that he could see her. When he fell asleep, I put him back in his bed. They were both sleeping soundly when we kissed them goodbye and came home tonight.

Right now, Maya is stable. They introduced 15ml of milk tonight and will continue, assuming she tolerates it well. The plan is to give her steroids tomorrow and then to try extubation on Friday. Hopefully, the meds will held keep her throat from swelling back up. Please pray. Pray that we will be able to hold our little girl on Friday and take away the horrible memories of this week.

She looks much better tonight. Her eyes are slightly puffy instead of deep purple and swollen. She still has a lot of secretions due to the vent tube, but the bleeding has stopped. She is drug free and isnt restless, so we are hoping this means she isnt in any serious pain. She can now open her eyes and focus on us, although she has to have eye drops every hour right now, which blurs her vision (and pisses her off). She's a tough cookie. She still has the strength to fight the nurses as they take her temperature or change her diaper. And our little chunky monkey holds our fingers so tightly that we would have to pry her fingers open to move them. She pushes her feet into Peter's hands for her nightly massage. And she will smile when she's kissed, even though it is hard with the tube... She will look up at us and melt our hearts with her beautiful eyes and little smile...

There are no new pictures... It is hard for us to see her with the tubes and I dont know if we will take pictures of this time... Suffice it to say, however, that she and her brother are still the most beautiful babies. They always will be.

And now, another NICU journey begins. Almost 8 weeks forward, and now 3 days backwards... Hopefully things will be better by the weekend.

Prayers appreciated. Continued prayers requested.