Progress

I haven't been able to update here in the past little while as someone who shall remain nameless has revised my schedule without my permission and made all of my blog-writing time into baby-cuddling time.

Samuel has been extubated for two weeks as of Monday. I can't even believe I am typing that! I had prepared myself for extubation to fail, for us to proceed to tracheostomy. Once again, Samuel had other plans. His medical team have been gradually moving him from BiPAP (ventilation providing pressure, rate and volume support to each breath) to CPAP (ventilation providing only steady pressure support). The first week of extubation was spent getting used to BiPAP. Last week, Samuel's job was to spend time working on CPAP while resting on BiPAP. Each day he did anywhere from 3 to 8 hours on CPAP where he had to do more of the breathing himself. He gets stronger every day.

Now, Samuel is on BiPAP only at night. He does CPAP for at least 12 hours a day and he does "sprints" where he is completely off the mask with just oxygen via nasal prongs. Each day they will challenge him a bit more, increasing the the length of his sprints and decreasing the amount of pressure provided on CPAP. The hope is to get him off the mask soon as it is hard on his face and interrupts his vision. His ventilation - and attitude - are fabulous during those times off the mask and he usually cries when it is time to put it back on.

Samuel is also getting a lot of support from the BBP and ICS systems. Fortunately, I am highly skilled with these programs of Baby Bum Pats and Infant Cuddling and Swaying. In addition to my own rigorous duties, Samuel's nurses and RTs are often roped into into the BBP and ICS regime that is now part of his care. One of the ICU staff said, "Samuel just wants to be held all the time!" to which his nurse Eva replied, "Ah yes, don't we all?!"

The most momentous cuddle of the week was had by Nana. She waited a long time to get a hold of grandson #6. I changed his bum, straightened all of his lines, swaddled him tightly, settled Nana in with a bunch of pillows, and put my baby into her arms. Many photos ensued and Samuel and Nana had a couple of hours to get better acquainted.

I am very comfortable with Samuel's care at this point. He still has about eight lines plus the ventilator mask with its two tubes and a wire. I know where these all go and what they do. I change his diapers, bathe him, give him clean sleepers and blankets. I pick him up like a normal baby and we have various positions that work around the breathing mask and lines. When Mr. Grabby Paws pulls out the ventilator tubes or manages to pop open a plug, I know how to fix it myself. He is rather crafty this way and once even managed to drop his chin enough while crying to push his mask up and get his fingers in his mouth. He has given me lots of practice at patching him up while we wait for the RTs to come to do a proper job of adjusting his mask. The constant ringing off of machines makes me feel seriously nutty at times but it no longer makes me scared.

Samuel's sedation is also being weaned so that he is currently on tiny doses of methadone and clonidine. He is fussier now, for sure, but this doesn't result in him dropping his oxygen saturations or heart rate. Change his diaper, rub his tummy, or pick him up and he settles pretty quickly. He has one more day of being on antibiotics for the blood infection he got from his femoral line. I am hoping they will then remove his PICC line since that is the only thing he still receives on infusion. His IV pole would then be gone and he would have only the pump for his feeds.

This is all part of Samuel's progression towards being a more normal baby. Last week, he was moved from his bassinet into a regular crib; he was getting so long that they were afraid he would slip out the end of the bassinet and make a break for it. He's started getting daily visits from the Child Life Specialist who brings developmental toys for him and things to entertain his brothers when they visit. The Physiotherapist has been by to assess him and has given us some stretches and positions to work on head shape and mobility. It is a good sign that these normal parts of his baby life are able to be addressed. They don't really work on visual stimulation and head shape positioning for children who aren't managing basic cardiopulmonary functioning!

Samuel has spent his whole life laying in a bed, unable to move, not breathing on his own. Before surgery, he couldn't lay on his right side at all since his only functioning lung was compressed by his digestive organs. After surgery, he's continued to prefer the left side as it made it easier for his good right lung to do the work and because his head oriented towards the ventilator tubing on the left side. He now has a bit of a wonky head shape and a stiff neck. These are things we can start working on and he will have support in the coming months. We anticipate that his development will catch up quickly.

All of this seems so normal that I forget that it's not. The other day I was frustrated at my inability to settle Samuel. I have three other children who all wanted a lot of holding and cuddling; why can't I do this? But then I remembered that my other three children didn't have their leads falling off and their ventilator mask springing a leak. They didn't have lines draping off of them and there were no obnoxious machines dinging and bonging constantly. I had more than two square feet that I could move with them and I could lay down or go for a walk or put them in a carrier. Samuel is a normal baby in many ways but with some ongoing challenges and not-so-normal circumstances. We are finding our way.

I have started to notice this taking more of a toll on our family life and on my big boys. For a long time, Samuel was so very sick and heavily sedated. I was there as much as I could be, making sure he knew my voice and felt my touch but knowing there was little I could do for him. That part was so emotionally difficult and this part is more pragmatically difficult. Now Samuel is awake and needs tending to. He knows his mama and there is no replacement for that. I need to be there more often and I am happy to be - except that I miss my big boys and they miss me. I have told them that I would be there all the time if it was one of them in the hospital too and I think Daniel understands this, Zachary gets it in theory, and Jakey thinks it is a load of hooey.

I feel overwhelmed most of the time and guilty some of the time. I am awake a good part of each night. I make lunches and do laundry and am almost done our taxes but I feel a bit in a daze. I supposed this all is a test of that "good enough" mommy theory that I have had tossed my way once or twice. I can't be a perfect mommy but can be "good enough" and acceptance of that is more peaceful for all. Or some such thing. Sigh. I do trust that there is enough love to go around in my family. I try to trust that this is enough to patch up the places where the mommy I am feels inadequate to the mommy I wish I could be. More learning and light a la Samuel Meir.

Helllloooooo Out There.............
Do you know they do not make oxygen masks for children?! This is the smallest adult-sized one on my wee baby's face. It still feels better than an endo-tracheal tube though!



Great big crib. Itty bitty baby.



Hanging out in the new chair from the Physiotherapist and reading with Daddy.

 

"Somebody. Help. Meeeee. This woman won't stop squishing and smooching me."

Mommy, Nana and Boppa admire Samuel's mask-free face and fancy striped lid.

Nana and Boppa get their first Samuel snuggle.

Love.