Some good-byes

This week has been one of great progress for Samuel. With nothing growing in his cultures, we said good-bye to antibiotics and he reached full feeds in a few days so that we could say good-bye to the TPN. He will keep his PICC line for now but there is only a sugar-heparin solution running through it to keep the line open. All of his other medications are oral so they are administered through his NG tube.

Sleep goal attained. Soother unnecessary but kept near by in case of emergency.

Here he is in his bouncy chair with a couple of friends.
The nasal prongs were drooping so we taped them to his nose. :)

Our most significant good-bye this week was to ventilation. On Thursday, Samuel was put on regular oxygen nasal cannula. There is no ventilator machine, no pressure support, no monitor for CO2 levels. Just oxygen. He is getting 30% oxygen, which is only 9% higher than plain ole room air. Lovely.

Sleeping in mama's lap in new tiny nasal prongs and swanky blue outfit.

Samuel had visits this week from his Great-Auntie Maria and his big brother Daniel. I made my Auntie Maria promise not to go too hard on the "miracle baby" thing for fear of turning Samuel into a raging brat. But he is quite wonderful, if I do say so myself.

Daniel was delighted to see Samuel and to comfort him by giving him a soother. Samuel smiled and kicked and played with us for nearly an hour. I almost forgot why he needed to be in the hospital at all. Daniel said to me, "It's amazing how good it feels to be able to make him happy and how hard it is when he is upset and I can't comfort him." Wise little man. I told him that was pretty much the essence of loving someone.

I know it is blurry but Daniel and I decided that the value of sharing Samuel's smile outweighed issues of photo quality.

A big good-bye is now looming. Plans are for Samuel to leave ICU and go to Unit 2 of the Children's Hospital on Monday. On Friday, some of his current medical team met with some of his upcoming team to discuss where he has come from and where he still needs to go. It was a bit tough to hear of all his difficulties to date summed up like that and to talk about all the things that remain significant concerns. He still has pulmonary hypertension. He will still be at high risk if he gets any infections. He will need more physiotherapy and occupational therapy, as well as an assessment of his hearing, vision, and brain development.

His greatest challenge at this point will likely be getting his belly working. He is showing signs of having reflux, which is a very common problem in babies like Samuel. He grew his entire digestive tract in his chest and things are still a little mixed up in there. He has not gained any weight in several weeks despite being fed more than typical calories. He was three kilograms at birth and has been glimpsing the four kilogram mark for some time now. Odd to think that he is nearly three months old and still not the birthweight of my other babies.

I am dealing with my separation anxiety as we prepare to leave ICU life. The expertise and love in this place have saved our baby and held us up through some awfully dark times. Since Sam seems to garner love where ever he goes, I am sure that we will find more on his next stage of the journey.

"Please help me. This woman makes me clap my hands every time I smile or fart."

Because every baby needs a velour leisure suit.

Happy Easter

The Easter Bunny came on Sunday morning to our house and also to Samuel's hospital room. Eggs were hidden and gifts were received. Samuel got a blue stuffed bunny that is bigger than he is. My boys are all curious as to how the Easter Bunny got past the doctors and nurses since they are there with Samuel all night. I had no good answer for that one.

We all spent the afternoon at the hospital - my family of six in Samuel's little hospital room. This lasted a brief period before the three big boys were taken outside to run their sillies off. This was successful enough that we finally had some photos of Samuel with his big brothers.

Daniel holding Samuel for the first time.

Zachary holding Samuel for the first time.



My four sons. (The deviousness in Jakey's eyes will indicate why there is no "Jacob holding Samuel for the first time" photo as yet.)



Easter supper was at my Auntie Maria and Uncle Gord's house with the Borbridge family. My aunties were glad to finally be able to get presents for this newest nephew and this was the cake that my lovely Auntie Maria had made up.

Yes, light up the world, Samuel. :)

There is no explanation for the array of symptoms Samuel had a few days ago. It may be a case of "better safe than sorry" applied to some normal baby behaviour. Samuel went back on his feeds this morning - a slow drip that will increase very gradually so as not to shock his tummy. The sepsis cultures all came back negative so the antibiotics were stopped and the IV taken out of his scalp. I think they will keep the PICC (central line) in this time just in case. Our poor little bloke has been poked so often in his short life that it's now extremely hard to get blood or put an IV in him. It was several tries before they got the scalp IV; he had several of those in his ten-day NICU stay but no haircut was required this time.

I spend every moment I can cuddling Samuel now. I have thought many times about what this start in life must be like for him - the pain and procedures and aloneness and the many, many drugs. The interventions alone carry their own kind of trauma but I think also of the lack of touch and comforting, the disconnection from his mama and daddy and brothers, the inability to communicate distress and get an appropriate response, the not feeding and having a full belly, not seeing and hearing normal things.

People tell me that he will not remember and I know that is true on a conscious level. But of course this beginning has an impact that we will likely never really understand. I spoke with Dr. Ferrin today and he validated my belief that the hospital experience is difficult, even traumatic for children and that they need attention to that in order to recover.

Before I got pregnant with Samuel, I developed a keen interest in early attachment, trauma, and neuropsychological development. Sometimes I wish I didn't know those things but Chris pointed out that maybe I did that learning so that I could help Samuel heal in ways that go beyond medicine, in ways that require a mama.

So I hold him for sometimes a couple of hours at a time where he has my heart beat and breath and warmth to nurture him. I whisper that it's okay, that I am here, that he is welcome in the world. I stroke his head and sing. I notice him seeming over-stimulated by the environment of his hospital life and think it must be hard to make sense of the world from here. I cup my hands around his face and make a little space just for us. Yesterday when I did that, he gave me his first for-real, unmistakable, eye-locked baby smile.

Wrapped up in mama.

Hello again...

So much for my goodbye to all that "stuff." Today we said hello again to a central line, antibiotics, and IV nutrition (TPN). Samuel had some indicators of infection and they started an IV in his hand "just in case" they needed access. Last night they decided to start antibiotics and take Samuel off of his feeds for five days.

Getting the central line is tricky because a PICC in a baby with pulmonary hypertension takes a lot of expertise and the other central lines carry greater risks due to Samuel's history of blood clot and infection. (Can you have a "history" when you are only two and a half months old?) When I head into the hospital today, he will have a central line and will be on two different antibiotics and TPN. I am grateful that they called to tell us what was happening so that it won't come as a surprise. Phone calls from the hospital at 11 p.m. and 7 a.m. stir a special kind of panic but it is good to know they will keep us in the loop even when we can't be there.

There have been many turns in this road with our beautiful Samuel. We'll see where this one leads us.

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.)



Extubated!

Samuel was extubated this afternoon at 2:30 p.m.. He went from ventilation via the endo-tracheal breathing tube to ventilation via a mask over his face. The ventilation system is called BiPAP and it offers pressure, rate and volume support as he had before but with the air around his face instead of directly into his lungs.

When they first pulled out the ET tube, Samuel spent a few moments looking around calmly and breathing room air completely on his own. I can't describe how exhilarating that was for Chris and I to see. The RTs fitted him with nasal prongs attached to a headpiece that holds the system in place. This was the least invasive way to go and we were hopeful he would handle it. He did not.

Samuel was not impressed with the air blowing up his nose and he just cried like crazy for a long time. The sweet part of this was seeing our Samuel's feistiness and... wait for it... hearing his cry! He has not ever been able to make a sound and has had a tube stuffed between his vocal cords for more than two months, so his cry was a barely audible, very hoarse, squeak. But we did hear him.

The not so sweet part of this was that Samuel's crying could not be settled and his wailing meant that the air was going in through his nose and then right back out his mouth. We tried to get him to close his mouth with a soother and then with a head strap but he fought back. My suggestion of duct tape was rejected. I know they wanted to try it but are bound by their professionalism to use their fancy medical methods.

Extra medicine, bum pats, hushing sounds, singing, and my very first standing-up-and-rocking cuddle all failed to calm him. His carbon dioxide reading at the first blood gas test was waaaay high and so Samuel was moved to a face mask that covers his nose and mouth. We can actually see even less of his face than when he was intubated but that's okay for the short term.

For you techies out there, Samuel is on a very new ventilation system with the BiPAP called NAVA - Neurologically Adjusted Ventilatory Assistance. Samuel's NG tube was replaced with a special tube that does all the usual things (that is, gets food and medications to his stomach) but also has electrodes at the tip. From their place in his belly, these electrodes receive the electrical impulses transmitted by Samuel's diaphragm and tell the ventilator how to respond to his immediate needs. Traditional BiPAP reads the signal from his actual breath; being able to read a signal from Samuel's impulse to breathe just makes the ventilation that much more efficient.

I found this incredible... the Autonomic Nervous System recognizes the need to breathe, the diaphragm receives the ANS signal and NAVA reads that signal at the same time so that the ventilator can assist whatever breath Samuel needs to take at the moment he takes it. If he needs a bigger breath to yawn or cough, the ventilator will receive a bigger electrical impulse and offer bigger support to that breath. The RTs can adjust the ventilator settings to allow him to receive less or more of this assistance as he gets stronger and ready for more challenge.

Also incredible was the realization that Samuel has enough natural diaphragm to trigger the NAVA system to respond to him. On the new ventilator monitor, we can see the little line spike as it registers electrical impulses from his partial diaphragm! Amazing.

There is a chance that Samuel will not be quite strong enough yet to remain extubated and make progress. We've been warned not to be disheartened if it takes him a couple of tries to make this work. If he does alright, the next steps are weaning his settings again to get him to the least amount of breathing support he can manage. Then they will do "sprints" where he is taken off the ventilator to do the work on his own, then put back on so that he can rest. His breathing muscles are weak from disuse and infection so the RTs will help him to build his strength.

Our wee babe is now more than nine hours post-extubation and doing great. He is very sleepy but it's good for him to rest as his body gets used to this change. It's been an incredible day for all of us; Chris and I were filled with hope, anxiety, and gratitude as we got to see and hear and hold our little boy through this new milestone. Go Samuel go!

One last pre-extubation photo.  

  

Samuel's near-naked face for the first time.

Holding and rocking my baby while he tries out his new nose gear.

 

Chris and Samuel holding hands... Samuel no longer needs wrist restraints to protect his airway from his grabby little paws going after the tubes.

Our Samuel now breathing with his full face BiPAP mask.

Extubation talk

Today the medical team in the ICU started preparing Samuel for extubation. The ventilator settings are at desirable levels and Samuel is responding well. A plan was made for sedation so that Samuel would be awake enough to breathe but not upset or uncomfortable. An NJ tube was put in so that feeds will go directly to his intestines, bypassing the stomach and reducing the risk that he could vomit and aspirate fluid into his lungs. Another antibiotic was added to cover the ventilator-associated infection (since he didn't listen to me when I told him no more infections!), even though he is not showing any outward signs of being sick at this point.

NG tube in one nostril, NJ tube in the other, ET tube down throat. What will these people think of next?!

Monday morning at rounds, the intensivist in charge will decide if Samuel is ready. If she gives the green light, Samuel will get to try life without a breathing tube for the first time. He will still be on ventilator support with an air-tight mask over his nose and mouth. The RTs will be challenging him to work his lung muscles and show us what he can do. He could be reintubated in hours or days and then we will resume the tracheostomy talks. Or he could demonstrate that he is strong enough to manage with less invasive oxygenation strategies.

Last night I went to the store on my way home and bought Samuel sleepers and hats. He only had two that worked and he managed to pull a typical baby maneuver by barfing on one and pooping on the other all in one day. He'd outgrown the newborn sizes - yay! He needs ones that don't go over his head and that snap all the way from ankle to neck so that they can work around the various lines. It was one of the most delightful shopping trips I have ever had, getting to outfit my baby who I didn't expect to be here.

Today we bathed and dressed him and then his brothers came for a visit. Getting a family photo was a bit challenging given that both Chris and I have a propensity to appear severely deranged in photos. Below is the best of the lot, the first of our family all together. Does anyone know how to photoshop Chris' eyes open?!

As Zachary says, "We are a SIX FAMILY now." Here's proof.

Daniel and Zachary have shown a real interest in Samuel and they spent a long time interacting with him today. They all held hands with him and showed him toys when he opened his eyes. They also set about trying to give their father an anxiety attack by constantly tripping over Samuel's lines and almost knocking over the IV pole. The ICU is no place for a crew of healthy boys. Jakey got his popsicle and went to the waiting room with Chris. Daniel stayed the longest, stroking Samuel's head, talking sweetly to him, and asking me lots and lots of questions.

It was a very sweet time for me to realize that my big boys really do love their baby brother. (Okay, I am not so sure about Jakey. I would not be surprised if he was plotting a superhero ambush of Samuel as soon as he can get him alone.) Zachary talks all the time about Samuel and how he feels happy that he is alive but sad that he is sick. He draws him pictures and writes him notes. Daniel is quieter about it but says he is sad that Samuel is having to go through so much and that he wishes he could hold him. Jakey cuddles up to me and asks if he can still be my baby for a while until Samuel comes home. One night he told me that he wasn't feeling well and his primary symptom was, "I feel like I have a tube down my throat." Come on, buddy. Mommy is a psychologist. At least make me work for the meaning here.

I think we are doing okay as a family considering that the juggling is just plain hard and we are into our third month of hospital life on the heels of some rough months before Samuel's birth. We take it day-by-day as much as possible. And it seems certain that one of the days this week will include that 'extubation' milestone. We pray for Samuel's strength to negotiate this step.

Jakey's popsicle face. Hannah help me, this child is, um, "full of life."

Zachary.

Daniel gets some time to sit quietly and hang with Samuel.

Our four boys.

TWO MONTHS OLD!!!

Yesterday, our Samuel celebrated two months of life. And there was lots to celebrate. The last few days have shown some heartening progress.

In terms of sedation, having Dr. Ferrin from Acute Pain Services involved has been amazing. Samuel is off of morphine and ketamine and almost off of medazalam. He is doing well on oral methadone (yep, the drug used to treat heroin addicts) and clonidine. He is waking up more often, looking around and taking in those of us here loving him and tending to him. Since he has no need for IV nutrition and has only two medication infusions left, Samuel's major central line was removed so he has just the PICC line in his arm. Woo hoo!

In terms of ventilation, Samuel is doing beautifully. With the right sedation on board, he is now having very few desats and bradycardias. His sats get droopy when he needs a suction, where they help pull secretions from his lungs since the ET tube prevents him from coughing on his own. He cries if he is annoyed about a blood test poke or diaper change or if he has gas pains - things that a normal baby would get annoyed about. However, Samuel recovers on his own most of the time now without additional medication or oxygen support. This indicates that his cardio-pulmonary bed is getting less reactive or, to us lay-folk, that his heart and lung muscles are getting stronger.

The weaning of ventilation over the past days has brought Samuel close to the settings he would need for extubation. He has not flinched in response to these changes so his team is quite optimistic. If everything stays the course as it is - and this is always a big "IF" with Samuel - then he will likely be extubated within the week. They will try moving him from the endo-tracheal breathing tube to a system called bipap - a mask that can provide oxygen and pressure as needed. We will see how he does from there.

In terms of feeding, Samuel was weighed this week and delighted everyone (especially Roxanne the dietician!) by having gained a whole kilogram since birth. He is now just shy of nine pounds. His feeds have been increased to account for his new weight. He has thrown up a few times but this may be a bit of sedation withdrawal or some of the reflux so common in these babies with mixed up innards. It may also be an infection so the cultures have all been sent off again just in case. I told Samuel in my very most authoritarian mama voice that he is NOT to get an infection now. No stinkin' way, Mister!!!

Once again we ride the waves of feeling so excited and also cautious. Our excitement has brought us to a plummet several times now. Every day is another reminder to be in each beautiful moment. I cuddled Samuel two days in a row this week, sometimes with him peacefully sleeping and sometimes with him awake and gazing up into my face. I get to rub his soft belly and exercise his wee chicken legs and stroke his little head. He is delicious.

AND... Chris finally got to hold Samuel on Thursday evening. I called him at the hospital to see how his visit was going and I noted rather quickly that he had that "drunk on baby" quality to his voice. Chris told me, "I'm holding him! I'm holding our son!" The nurses and RTs who engineered this hold were almost crying watching this pure daddy happiness. Soooo lovely.

Thank you all for prayers and love sent Samuel's way as we negotiate these next few days. I will update as I am able.

Samuel sleeping in my arms (with cap at a jaunty angle).

Well hello, mama! I trust you have a darned good explanation for all of this!