More progress... itty bitty steps

On Monday morning, Samuel got to try out a new ventilation system delivering pressurized oxygen via high-flow nasal cannulas. He liked it so much that he spent all day on it. I kept waiting for them to say that he needed to go back on BiPAP to rest. I stayed until 1 a.m. when the RT told me for the third time that he was doing fine and they weren't putting the big mask back on his little face. 

On Tuesday morning, Samuel's ventilator was wheeled out of his room. The machine that has kept him breathing for his 11 weeks of life is gone. I was a bit superstitious about them actually taking it away but it was already gone when I arrived that morning. In two weeks, we have said good-bye to the endo-tracheal tube, the ventilator and the great big oxygen mask.

We also said good-bye to Samuel's PICC line on Tuesday. He was on a month-long course of antibiotics for the infected blood clot he got through his femoral line but he completed those antibiotics on Monday. No more IV infusions for so the last central line came out. We celebrated with Samuel's first ever tub bath. He wasn't all that impressed with this marker of his new line-free status but his nurse Lindsay and I enjoyed it immensely.

And one more good-bye for Tuesday... Samuel managed to loop his tiny baby finger around his NJ tube and yank it out. Of his intestine. Nice work, Sam. CPAP pushes air into the stomach and can cause discomfort and vomiting if there is food there as well. So Samuel has had an NJ into his intestine to by-pass his stomach for feeding and medications, plus an NG into his stomach for venting air.

Getting a new NJ tube in is challenging since Samuel's anatomy is still a bit mixed up. After a couple of tries, they opted to try feeding him with the tube in his stomach to see how he would do - a risky maneuver that has paid off. Samuel is now on full feeds via NG. He has been much more content in the last day or so, which may be in part because he has a full tummy again. Who doesn't like a full tummy?!

The only dark spot on the near horizon is that the big boys and I have all had colds and I am fretting that Samuel will get it too. What is just some stuffy noses and coughing for us could be some enormous steps backwards for Samuel. If he can stay healthy, they will keep weaning his pressures on the oxygen and he could go to the Unit in a week or so. I will miss the beautiful people who I have grown attached to in our time at the ICU but I know the Unit is one step closer to bringing our baby home.

Trying out the new nasal cannula. The skin breakdown on his nose is from the big mask. The duoderm is still on his chin in case we had to go back to BiPAP.

Samuel line free (sat probe and leads are just off temporarily) for his first tub bath. Samuel learning to take a soother is a huge step against the oral aversion that intubated babies usually develop. Hopefully this will lead to being able to eat via mouth soon!

Cuddling is so much easier without the PICC line and the oxygen mask. We are now down to six tubes to manage!

Wide awake and cozy in blankets. That little face is healing now.

Asleep in Nana's arms.

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.



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.)