Bye-bye breathing tube

Yesterday was my birthday. I turned 24 years old. Samuel had a terrible day. And, as Zachary would say... "it's backwards day."

There is no need to speak of what that means in terms of my actual age. But Samuel did actually have a brilliant day. He has been extubated for over four days now and is doing incredibly well. Dr. Ferrin continues to manage the sedation and we've been shocked by how much less Samuel seems to need now that he doesn't have that tube in his throat. His medical team continues to wean ventilation and to delight in his progress.

Yesterday, the intensivist in charge came to chat with Chris and I to make sure we understood the plan. Samuel is accommodating all of the ventilation changes so far without issue. More problematic than his breathing is the breathing mask. They don't make BiPAP masks for tiny babies (?!?!) so the mask leaks if he moves around too much or cries and drops his chin. It can also cause skin breakdown but so far the Duoderm is doing its job to protect his face. The mask affects his vision and I am sure it is uncomfortable but he is tolerating it well right now and we hope he won't need it for much longer.

The doctor said he hopes to have Samuel off the ventilator within a couple of weeks, on oxygen via nasal prongs. I asked if we would then leave ICU and go up to the Unit. He said we would, but that it was time to start thinking about going home at some point as well. Um... okay! :) Chris asked what happened to the talk of tracheostomy that was so intense a couple of weeks ago. He said, "I never say never, but trach is no longer on our radar for Samuel."

We are baffled. What happened to our baby who had only 22.5% fetal lung volume, who gave me polyhydramnios because of his severe defect, who we prepared to hold and say good-bye to after delivery?! I asked my beautiful friend Lori if I made all that up. She's gracefully travelled this whole journey by our side. She was there taking notes at the meeting with Neonatology and Surgery last November. She was there the day my water broke and Samuel was born. She loved and prayed faithfully for Samuel. She said I did not make it up; Samuel has just proven them all wrong.

None of that matters now. We have our boy. He is here. He is loved. His brothers have an all new interest in him. Jakey spent several hours at the hospital with me on Tuesday watching a movie on my laptop and colouring. When I held Samuel, Jakey snuggled in next to me and held Sam's foot. He said, "I love you Samuel" and then he looked at me in alarm. I suspect it is incongruent with Jakey's devious plans to have confessed his affections aloud. To woo me back into a false sense of security, he suggested we sing our family lullaby to Samuel. Holding my baby while singing Baby Mine with my four year old was one of many slices of heaven that I have been privy to lately.  

When I picked Daniel and Zachary up from school later that day, the first thing out of their mouths was, "How is he? Can we go see him?" They adore him. Zachary read a 128 page book (he was very clear on the number of pages, rather proud of this accomplishment) at school one day but he stopped at 102 pages and saved the rest to read aloud to Samuel that night. Daniel told me that it feels great to be the biggest brother of four and loves it that I've dubbed him "King of the Boys." He said this gives him the power to boss them all. What is that phrase - benevolent dictator? - let's go for that.

I held Samuel for a long time on Wednesday. He started out fussing and I was nervous moving him around too much since the seal on his breathing mask is finicky. His nurse suggested I hold him as I would my other babies so I put him up on my shoulder, snuggled him against my neck, breathed him in. We maneuvered his breathing mask so that it was not in the way, found our sweet spot. I stroked his soft little back for the first time ever. He calmed instantly, became a bunched up little ball of baby and slept like that for three hours.

It is the most incredible thing to finally be able to comfort my baby. It took me a long time to admit defeat, that my mama powers were not enough to make my baby feel better and what he really needed was no touch, no noise, more drugs. Now, he is becoming a "real" baby again. He cries when bugged but settles down right away. (His cry is getting a bit louder but is still rather hoarse and pathetic, kind of Joe-Cocker-esque.) He fusses when he has gas pains and calms when I rub his tummy. He fusses when he hears me come into the room and calms when I stroke his head and talk to him. He fusses when his diaper needs changing and calms when he is clean and dry and bundled back into his soft Nana blanket.

The plan now is to wean ventilation settings and move him from BiPAP to CPAP. The CPAP uses the same mask, unfortunately. It gives Samuel continuous oxygen pressure without the settings that offer volume and pressure support to each breath. He will be doing more of the work on his own to continue building his breathing muscles. From there, they will "sprint" him, giving him short periods of time breathing on his own, then back on the breathing mask, then going it alone again. There is an important balance here where Samuel is challenged but not worn out. If he gets too tired, there is a chance he would be reintubated to give him a rest.

Sam got an unofficial sprint today when I asked the RT if we could take the breathing mask off for a minute so that Chris and the boys could see his sweet face. His mask comes off briefly a few times a day so that he can have a break and we can wash his face and mouth. He always does fine with this, breathing on his own with just a little oxygen blowing next to his face.

So Samuel ended up spending nearly fifteen minutes without the mask, holding his O2 saturations up at 99 and 100% with his parents and brothers and lovely RT gathered around him. He opened his eyes and looked around, especially gazed up at Lisa as if to say, "hey, thanks for the help."

This was one of many beautiful moments that we have had with our baby thanks to the nurses and respiratory therapists. They are our angels. I have stopped trying to thank them or name them here; someone will get left out who deserves our love just as much as the next. I try to express our gratitude for each little and big thing, for the moments they give us of bathing Samuel, holding him, seeing his little face, for the times they talk to him and dress him and choose matching blankets when they change his bed, for the patience with which they answer our questions and welcome our big boys. They shared this care through very dark times with Samuel and they share the lift of heart and spirit that he is bringing us now. We are in awe.

Taking a rest from the mask for a face wash. It's amazing how grungy a baby can get while he's laying around doing nothing all day.

Samuel and Zachary having a heart-to-heart about early literacy.

A mother-son nap. The wee cap is part of keeping the breathing mask in place. Unfortunately, it obliterates the only part of Samuel's head that is untouched by the NICU haircut.



A bit more Duoderm on Sam's face now to protect from the breathing mask. Here he is today gazing up at us. (I think he loves you, Lisa. Don't tell Angel. Or Suzanne. Or Kristy. Shhh.)