Thoughts from Daniel, age 8

I've finally gotten to do my first entry on my mom's Blog. And I just have a few thoughts about my little brother.

Having Samuel has been a hard experience but I think it's been good for me too. Before Samuel was born, I was really sad because I was sure that Samuel wasn't going to live. That was probably the hardest experience for me. Now I realize that a miracle has happened. Now I know he is going to live with us and live well. He might have some tough parts of his life but I will be able to teach him things.

It's good to know our way around the Children's Hospital. Seeing sick kids has taught me that those kinds of things happen but there is someone to look after us. It's hard that mom and dad have to be away so much but they've managed to have someone looking after Sam and someone else taking care of my brothers and I and keeping us busy. That is not easy and my parents have done a great job.

Ever since Samuel was born, I've been gradually getting used to it. In the beginning, I didn't see him much because he was too sick for my brothers and I to visit. So I was just wondering and hoping at home. Now I am used to going to the hospital, seeing all the equipment and medicines gradually disappear. But I've never totally understood it. Lots of things I still want to ask. He was on so many medicines - what were they all for? How did they make him a diaphragm and what did they use? How did they teach him to breathe on his own? How are they feeding him? How much longer will Samuel stay in hospital?

So many questions. Did the doctors save my brother or did a miracle? How do miracles like this happen? The doctors and nurses didn't just teach Samuel. They taught us too. I find it pretty amazing the way Sam has survived all this commotion with his CDH and all the surprises that came with it. 

Sam's a great baby and I want to be a great brother. I've had many visits to the hospital where I've held, played with, or just watched Sam sleep. Whatever we do is fine with me as long as I'm with my amazing, recovered, great little brother. Although I don't know exactly what he thinks, there has been quite a lot of change in his life. Foothills Hospital to Children's Hospital, getting through surgery and infections, endotracheal tube to biPAP mask to nasal prongs, ICU to Unit 2, feeding tube to bottle. I never expected even one of these to happen, and I'm sure Sam didn't either. So I want to be beside him the whole way.

February 1: Meeting Samuel for the first time.

April 3: Looking at my little brother sleeping as I stroke his head.



April 22: Holding Sam for the first time as we look together into the camera.

May 29 (yesterday): Me talking to my baby brother on the bed at home.



Completely uneventful weekend

A pretty unremarkable couple of days. Did some work on my course. Cleaned the house. Spent lots of time at the hospital. Samuel gained some weight and did some great bottle feeding. He had a bath and slept. Oh yea, and he came home to visit for the first time ever.

Getting ready to leave the hospital. Samuel's knees are not this grotesquely large. It's just a perspective issue.

We timed our home visit for the two hours that Samuel has between feeds so that we didn't have to take a feeding pump with us. I gave Samuel his bottle and then he slept in my arms while he got the rest of his feed topped up via NG. Then we packed a few supplies (blankets, diapers... everything is in Samuel's hospital room until he comes home for real), hooked up the portable oxygen tank and sat monitor, and buckled Samuel into a car seat for the first time ever.

Walking out of the hospital was exciting for all of us. Samuel was wide awake and looking around. Jakey said to him, "There are a million worlds out here, Sam. You have to trust me on that one." Zachary and Daniel took turns with the all important task of pulling the oxygen tank at just the right speed and distance from the baby so that nothing gets tangled up or disconnected. Chris, despite being a father of four, nervously regressed into a man who appeared to have never held a baby. Just like when we brought our other babies home from hospital, he drove while I sat in the back guarding baby from wayward rays of sunshine and potential sabretooth tiger attacks.

Heading down the hallway in the Children's Hospital.

Riding in the van... Samuel's only other trip in a vehicle was the transport ambulance on the trip from NICU to PICU when he was 10 days old.

Hey, I like it here... at home.

"Here I am in my bed... at home... with my very cute sneakers. But please could someone tell me what is that growing out of my head?!" (Just kidding Uncle John and Michael. Thanks for the sweet bear.)

At home, we changed a diaper (Samuel's) and hung out on the bed in his new room (mine and Chris'). We went for a slow walk around the block with the boys again acting as capable oxygen pullers and a few of our neighbours came out to admire Super Sam. We only had two hours from start to finish so there was just time for Samuel to lay in his new bed and for us to take a few photos, then we piled into the van to take him back to the hospital.

It was glorious. I had my family around me. Samuel did great but he was exhausted afterwards. I bundled him all up in his bed and he was totally zonked. Chris called to check on him later that night and we were told that he slept through his next feeding, his evening medications and shot, and the feeding after that. Big steps. Little baby.

Me and my babe... at home.

Our family... at home. (Did I mention we are at home?)

All tuckered out.

Feeding. And also Faith.

Samuel is in hospital at this point primarily to deal with the feeding issues. From a lung perspective, he is doing great. The doctors are not weaning his oxygen requirements past the 1 litre/hour that he is currently at because they want the O2 to help him grow but they don't think he needs that much for respiration. He is getting stronger all the time and physio and occupational therapy are happy with his progress here.

A few days ago, Samuel started "bolus" feeds. He went from getting a steady drip 24 hours a day to having an hour on and then an hour off the feeding pump. We watched to see whether his tummy could accommodate the doubled volume. He did fine so on Thursday night he went to an hour on and two hours off. What he would have gotten in three hours he was now getting in one; again, he tolerated the increase in volume just fine.

For the first time, I heard my Samuel make hungry noises. I remembered that sound from my other children, the cry that is a little different from the other cries our babies use to communicate. I offered him his soother and he did just as my others would - sucked desperately and then spit it out in frustration. Samuel is becoming more like a "normal" baby every day.

We now are at the hospital even more so that we can feed him every three hours. As soon as he expresses hunger, we offer him a bottle and he takes as much as he wants. If we wait too long or he spends too much soother time first, he tires quickly and takes only a bit. If we time it right, he can take about a quarter of his feed by bottle before he tuckers out. Whatever he doesn't take is fed to him via his NG tube.

That Samuel is progressing so well with this is enormously exciting. The doctor told us this week to anticipate him coming home in late July. However, if Samuel continues to consistently feed and gain weight as he is, it is hard to imagine that we will need another two months in hospital. We are so eager to have him home and will get to "practice" with some home visit passes in the next while. We can bring him out of hospital for a couple of hours at a time to be in his home with his family. Oh my goodness, I can't believe I am writing that. 

I had a visit from the nurse with the HOME nutrition program on Friday. HOME is not actually capitalized in the title of her program but I like the way it looks and sounds. She introduced herself as the HOME nutrition nurse and I said, "Sam, did you hear that? She said HOME." I was a bit giddy using the word HOME so hopefully she didn't feel the need to call Social Work on me.

The nurse taught me about naso-gastric tubes and then I pulled out Samuel's old NG tube and put in a new one and learned how to check that it was in the right place in his stomach. Someday, Samuel can put a tube up my nose and into my stomach to pay me back. Okay, I don't really mean that. Bleh. Don't tell him I said that.

Oh my gosh. All this cuddling and gazing and smelling baby smells. Sigh....

In all this excitement, I have not lost track of the incredible grace of this experience. I still go to the sacred space down the hall from Unit 2. I sit in the quiet there and I hold my prayer beads and all that comes out is, "God, help me be the mother that my children deserve" and "thank you thank you thank you thank you." I wish I was a little more articulate in my conversations with the Creator but, most days, this is all I've got.

One of the moms I met in ICU came to say goodbye before they took their son home this week. Baret was a healthy, busy three year old until he started having massive seizures. He spent his fourth birthday in ICU in a medically-induced coma to try to stop the seizures and brain swelling. I remember seeing them in the room across the hall from Samuel and feeling deep resonance with their experience despite our different particulars. Like us, these parents were told that their child would likely die. Like us, they feared and prayed and cried. Like us, they discovered what it was like to get your baby back.

This mom and I know very little about each other but what we do know is of the most intimate nature. We cried together and understood things that didn't need to be spoken. We are forever bonded by our miracle boys. When I saw Baret a couple of weeks ago, he was in a wheelchair, had a lot of muscle tremors and just a few words. When he and his mum came to visit a couple of days ago, he walked into the room with only a bit of a limp. Daniel, Baret and I had a conversation about his Spiderman and Shrek stickers. Baret giggled at his ability to make Daniel laugh by tickling his feet. I am so moved to be privy to that kind of amazing beauty and spirit. God bless sweet Baret and his mum and dad and brothers.

Four!!!

Four kilograms, that is. Or for those of you used to pounds (as I was until I finally got annoyed with always having to google the metric conversion chart in here), Samuel is now just a little over nine pounds. He has gained back the weight he lost after extubation when he had to expend so many calories just to breathe. Yay!

The aim is for him to be consistently gaining 20 to 30 grams a day on average. He might just have gotten there this week. At that point, we can pause his continuous NG feeds for short periods so that he feels some hunger and will be more motivated with the bottle feeding. He should be taking all his food orally when he comes home, although he may still need an NG to top up his calories at night.

Saturday I spent the day moving furniture in our bedroom at home, cleaning the carpets, washing the bassinet linens, setting things up for Samuel to be here sleeping next to me. It will likely still be four to six weeks before he is discharged but I needed a little sense of movement, a little feeling of getting ready for him to come home to us.

The bassinet we hope he won't have outgrown by the time he gets home.
There is space behind it for the oxygen converter. Come home, Sam.

We also did our pizza night with Samuel on the weekend. Chris took the boys bowling and then brought pizza and drinks to the hospital. We put Samuel in the swing next to us and set ourselves up on a big mat on the floor. After eating, we did some Lego as the Child Development specialist left some things for my boys to do over the long weekend - thanks Sue! Felt good to have my family of six doing something so normal together - even if it was at the hospital.

All my boys.

These things mean a lot to me right now. I am wearing out from months of my family being divided plus months of angst before that. Hours a day in that little room will drive a person mental and it gives me a lot of time to focus on things like our ongoing concerns that Samuel's vision is impaired, possibly his hearing also. There is no way to know how much at this point. We will deal with whatever comes our way - as we have all along - but some days it is tougher to hold my resolve. One foot in front of the other....

Lots of cuddle time with Mum.

And lots of smiles.

Samuel even smiles when sleeping. I suspect he is dreaming of being back in ICU when he was on Ketamine (known on the streets as Special K). As far as I could tell, that was some good stuff.

My beautiful boy.



Life on the Unit

We are feeling more settled on Unit 2 now. It has taken some time to get used to a whole new way of being in the hospital with Samuel. We have our own room with a bathroom and daybed. We have new nurses and a new team of pediatricians. We have a lot more independence and I have even taken Samuel for a couple of walks, wearing him in the front carrier while rolling his oxygen tank along behind us.

There is a sense of life on the Unit that is different from the ICU. Intensive Care is just that; the most intensely sick children in the hospital are there and the space carries its own buzz of activity and emotion. I didn't even realize how accustomed I was to the ever present agony and magic and the gentle comfort from a team of people who are used to loving children into life or into death.

It has caused me to reflect anew on Samuel's course to date. He spent the first month of his life preparing for surgery, the second month struggling and then healing, the third month extubated and learning to breathe. His time in the ICU was about surviving. This fourth month is about living and hopefully thriving. Those who meet him now often don't even know how sick he was. I decided this was a blessing, an opportunity for us to focus on him being our baby who is getting well and coming to join our family rather than our baby who almost died.

However, it has sometimes been a bit of a disadvantage for Samuel's caregivers to not know how sick he was. One nurse vehemently challenged the feeding plan until I noted that he'd been intubated for more than two months and then on a mask so there'd been no access to his mouth until a few weeks ago. The audiology report showed significant hearing loss but the results were not interpreted in context. I explained to the audiologist that Samuel spent the first two months laying in a bed, unable to tolerate visual or auditory stimulation, with no touch, heavily sedated, recovering from surgery, intubated and restrained. Given that he is not *really* three and a half months old, the results of our stressful two-hour test weren't valid.

Samuel has a medical chart, of course; the pared down version is a binder about five inches thick. It's not reasonable to think that every person he comes in contact with will read it all. The people around him are all willing to give amazing care but I am learning that I need to be here to inform and advocate on his behalf.

Chris visits Samuel every morning on his way to work. I take the boys to school and then I head in to the hospital for the day as well. There is a patched together schedule of preschool, playdates, and hospital play time to look after Jakey's days. After school is me or Chris and then my Mum and Dad one day a week. I usually come home for supper and soccer and then go back to the hospital in the evenings. I keep thinking that it will be for just an hour but Samuel does some lovely awake time late in the day and I end up going home around 11:00.

Samuel has had an array of tests since coming to Unit 2 - echocardiogram, ultrasound, blood work, a visual potential exam, audiology tests. In ICU, the people doing these tests came to him but now we go on field trips through the hospital with his IV pole of feeds, a big O2 tank, his chart and him.

Otherwise, Samuel and I spend our days cuddling and playing, much as we would at home but without getting to be in our normal environment with the family together. I bathe him, read stories, sing to him. I know his signals and routines well now. I do his practice bottle feeds and daily physiotherapy. He smiles a lot more now and his constant expression of worry has eased. Every day he gets a little stronger than the day before.

Some milestones in the past couple of weeks:

• Samuel's visual potential test came back completely normal, meaning that his vision pathways are in tact and there is no neurological reason why he wouldn't be able to see. This doesn't tell us that he actually can see but it's good news for now. 
• His audiology reports indicate some hearing loss but we will re-test a month from now to allow Samuel to mature. Many of the interventions that saved Sam's life effect vision and hearing long-term and so it is time to check those things out. 
• Samuel's PICC line was removed, making arm movement, tub baths, dressing and going for walks all much easier. He is now down to an NG tube, the oxygen prongs, and an O2 saturation probe on his foot. He has five medications - Aldactazide for cardiac function, Ursodial for liver function, Sildenafil for pulmonary hypertension, Enoxaparin for the blood clot, and Ranitidine for reflux. He also gets supplemental iron and vitamin D. The methadone and clonidine are gone - no more sedative drugs! He seems extremely unencumbered compared to the days of ten IV pumps, multiple lines and leads, and ventilator. 
• His liver enzymes are tested weekly because of all the TPN that he received. His bilirubin levels went from 101 to 58 in three weeks, with normal being about 25. Yay! Other blood results are also returning to normal.
• Samuel rolled over from front to back. Twice. I wouldn't have believed it but the physiotherapist saw him do it. She has commented on how strong and agile he is, especially given what a rough start he's had. They also are seeing improvement in his wonky head-shape from my diligent efforts. I revert to these positives when I am feeling anxious about his hearing and vision.
• His oxygen is being weaned gradually and there has been talk of sussing out homecare companies and what he might need when he comes home.
•  After more than three months here, I discovered that there are chocolate bars are in the gift shop, thus ending my rants about the lack of chocolate in the hospital. Why didn't someone tell me this sooner?!

Samuel's hair is growing back on top and is all furry and sweet. He loves it when I hold him and dance. The nurses found a swing for his room and he loves that. He does a lot of stretching and snuffling when he is trying to wake up. (Just like his mommy, he takes a long time to wake up and protests the whole time.) The first few times he raised his arms up over his head he appeared rather freaked out, like, "Um, excuse me, can anyone else see these things flying around my head?!" He is getting accustomed to this new mobility and starting to coordinate reaching. He smiles with his whole face and I can feel a laugh coming soon. It is the most beautiful thing ever.

The big challenge for Samuel is weight gain. He was nearly nine pounds when extubated but a month of working so hard to breathe meant he lost nearly a pound. In his first ten days on the Unit he gained nothing. Nada. Zip. There was much testing of poop and some dietician math and talk of illnesses like Cystic Fibrosis that can cause malabsorption issues. In all the kafuffle, no one mentioned the simple "calories in versus calories out" hypothesis.

Finally, the respirologist noted that this is really normal for babies like Samuel who use a lot of extra calories for tasks like breathing and digesting. Adding back the calories he needs is complex; too much volume can stress his vulnerable heart and too much concentration can stress his vulnerable digestive system.

Samuel had microscopic blood in his stool and there was a lot of talk about potentially worrisome reasons for this. Turns out that it is normal for babies with an NG to have some stomach irritation and, if other likely causes have been ruled out, we can stop worrying about it. Then Samuel played a sneaky little game of hide-the-testicles and ended up having an ultrasound and a lot of poking. Again, turns out this is normal for CDH babies and his testicles will be pushed down the rest of the way now that he has his abdominal organs in his abdomen.

Samuel is going to kill me later for publicly discussing his testicles. But it supports one of my big lessons about this phase in the hospital. It is the doctors' job to watch out for illness but I needn't respond with anxiety. I appreciate their knowledge and caution and will leave that to them. But, in the interests of decreasing my roller-coaster time, I am now making it my job to watch out for wellness.

The last few days, Samuel has started to gain some weight. They increased his feeds slowly and changed the canola oil to a more easily digested oil called MCT. If he can trend some weight gain, we can stop his feeds for brief periods so that he feels hungry and will be more motivated to take a bottle. The skills he has gained from bottle practice are strong and now we want to move to the next step of getting him orally fed. And of course, the consistent weight gain is part of the "you can take him home" criteria.

It is rather disconcerting to have this much focus on my child gaining weight. Weight gain is not difficult for me. I consider myself a bit of an expert. A box of Oreos, a cheeseburger, a Peters' milkshake... I could help here if they would let me.

Samuel asleep in my arms. Can you see the 5:00 shadow forming on his head?!

Touchdown!

Happy Mother's Day

What a special mother's day this year with my four boys. Was that more than a week ago already? I am behind. I get bits and pieces of a blog entry done and then Samuel wakes up or someone else comes in to check on him. The days here are full - doctor, specialist this and specialist that, nurse, dietician, physiotherapist, occupational therapist, med students, even the IT guy come to check the monitors. Still I manage to work in a LOT of snuggling. 

On top of all that, I am teaching an online graduate course for the University so I try to do some email and online work while there is a lull. And Jakey is coming in to the hospital with me a few times a week. The Child Life program at Alberta Children's Hospital extends to patients' siblings as well - they really look after our whole family here. So Jakey has a bunch of fun things to do in Samuel's room and has access to the playroom and art program when they are available. He is making some new friends of the volunteers and other patients and seems to like hanging out with Mum and baby brother.

I will try to post a more complete update soon but, in the meantime, here are a couple of photos.

"Okay, happy Mother's Day. I will give you one picture, Mum,
but then I am gonna poop all over this new shirt you bought me."

 

"I thought I could teach you to stop dressing me up for your own pleasure.
Trust you to have a "back-up" Mother's Day shirt."



Jakey is developing his Adore-Samuel-Help-Mommy skills, thus re-constructing his role as super-charmer of the family. Very clever political strategy, Jakey.

While at it, I must wish a Happy Mother's Day to my own mum. Thank you for listening to me and crying with me over the past few months. Thank you for being open to whatever this wee babe was going to bring to our lives. Thank you for giving up your months in sunny Arizona to travel this journey with us. Thank you for celebrating each milestone, however small, and for making a million blankets. Thank you for being the kind of Nana who leaves no doubt that my kids are happy and well cared for. Thanks for crawling around on the floor building stuff and showing interest in the latest Nintendo DSi game and knowing how to circumvent any little boy meltdown. Thank you for holding us up even when your heart was breaking too. Thank you for loving ALL my boys. Thank you for loving me so much. I love you right back.

Moment of the week

Top three "Moments of the Week" are:

Jakey's smile as he gets to hold his baby brother.

Samuel figuring out how to hold his own soother in.

Getting to feed my baby for the first time. I never knew it could feel this amazingly sweet to give my baby a bottle.

Samuel's nutrition still comes via his NG tube but we were given the green light to try some practice with oral feeds. He took to it right away and is already making progress in developing strength and coordination in his suck. We will continue a couple of times a day and see how it goes. It takes a lot of energy for him and he is very tired afterwards. His formula smells just like salt-and-vinegar potato chips so we'll see how long it takes before Samuel starts making late night runs to 7-11 for the real deal.

THREE MONTHS (plus three days) OLD!

Our wee Samuel is three months old!

The ICU planned a special celebration for Samuel's three month birthday on Sunday... they let us take him outside! He was put on a portable sat/ekg monitor and hooked to a big portable oxygen tank. We pushed his IV pole along with us. Chris and I were joined by Nana, Boppa, and our three big boys on Samuel's first "journey." Our lovely nurse Kat came along to make sure everything went alright. We were quite the entourage as I held my baby in my arms and walked him out into the sunshine and fresh air for the first time ever.

"Um... how exactly does a bath and fresh blankets constitute a birthday present for ME?!"

Mommy's super star OUTSIDE the hospital. Yay!

Mommy and Daddy snuggling Samuel in the sunlight.

Daddy introduces Samuel to our beloved mountains in the distance.



Our family (plus IV pole and oxygen).
Thank you ICU angels, especially Kat, for this moment.

On Monday morning I arrived in anticipation of our transfer to the floors. There was a bed for us and everyone agreed it was time for Samuel to take this step. My friend Alison arrived just in time to cuddle Samuel while I packed up his room. His ICU nurse Eva did report with his Unit nurse. Porters were called. Good-byes were said. Samuel and all his stuff were wheeled through the back hallways and up to Unit 2.

Our new digs.



View of Canada Olympic Park and the Rockies from our hospital room.

Everyone told me that this would be a tough transition and they were right. Our new room is lovely and I know we will find our angels among the new crew of nurses. I miss the ICU. I miss that every face was familiar, that I knew all the routines, that there was always someone loving my baby when I couldn't be there. This morning I walked into the hospital, went up the staircase and down the long hallway to Unit 2. For the first time in this whole experience, I felt like having a monstrous temper tantrum. I felt like stomping my feet and yelling, "give me my baby! I wanna go home!"

I did not do this. I decided that Hospital Security had enough to do and I restrained myself. Samuel was being cuddled by a volunteer and then his nurse came in and was sweet and motherly to me and to him. And I instantly went back to being in the moment, one foot in front of the other, appreciation for this day and for each milestone.

Tuesday's milestone was Jakey holding Samuel for the first time. I know I have joked about Jakey's dastardly intentions towards the child who relieved him of his "baby of the family" title. But Jakey was beyond excited to hold his brother and very sweet with him. His little buddy Felix had come to visit and Jakey went into proud big brother mode, showing off this new tiny member of our family.

Jakey and Samuel. Yea, Samuel looks a little freaked out. But he's a baby. We needn't read into his expression too much. (So says the woman who lead a caption contest a few weeks ago.)

We are tackling the feeding challenges now. Samuel is tolerating his full NG feeds plus canola oil three times a day to boost his caloric intake. He is taking a soother and still has a suck and swallow reflex that we can build on for oral feeding. He will be weighed tomorrow and we just hope that he is starting to gain weight. We expect to be in the hospital with him for another two months but maybe a little less if he can prove that his guts are working.

"Give me my Mommy! I wanna go home!" (Okay. He's actually yawning, not yelling.)