Wednesday, July 6, 2011

FIVE MONTHS OLD

Sam has been home for a week and life is settling in a little more. (Just a little.) I feel a bit like I have a five day old baby and not a five month old baby. My hormones and my heart had to get used to the fact that I had just given birth but that I had no baby to hold and feed and get up with at night. It became our "normal" that there was this hospital world and this other world, that we had a child we loved and who didn't live with us. The other day I had a truly surreal moment of walking into my bedroom and seeing him sleeping in his bed and thinking, "Oh my Heavens! There's a BABY in here! Where did that baby come from?! Oh yea, right."

Samuel's latest tricks include reaching for and grasping objects, kicking and rolling from front to back, and eating his nasal prongs. He is finding his own patterns of eating and playing and sleeping after a hospital life of schedules. And he has ... wait for it ... fat creases developing in his wee thighs. Yay!

Best of all, Sam is starting to "talk." After being intubated for more than two months and almost needing a tracheostomy (which would have meant he couldn't vocalize at all), I do not take his voice for granted. It took a while for him to learn to use those vocal cords after extubation, then he had a cry or silence but not much else. In the past couple of weeks, he started to babble. Yesterday, we laid on the couch and had a conversation, him cooing and chattering and me responding with interested and appreciative utterances. It was so very beautiful.

Samuel and I spend a fair bit of face to face time. I know the spot where he can focus his eyes on me and I talk to him and he responds with excited kicks and smiles that light up his whole face. With the right tone of voice, just about anything I say will elicit a joyful response in this boy. I begin with obvious statements such as "You are so lovely! Yes you are!" and then move into using a similarly excited tone to say things like "Could we change your NG? Yes? Would you like a new tube up your nose?" He grins big for this. Apparently, his verbal comprehension skills are not so good. 

"Yes, that is my NG taped to my face but not actually IN my nose. Milk is spilling all over the bed. My parents must now change my tube at 11:00 at night. Mwa-ha-ha. I am a crafty little bugger."

Thanks to my genetically inherited need (thanks Dad) to make up ridiculous nicknames, Samuel should be soundly confused about his actual name. (I remember the doctor asking me at Daniel's nine-month check up if he responded to his name. I was like, um, let me try that out and get back to you.) In addition to being called by the names of his three brothers, Samuel also is referred to as Schmoobie Noobie McBoobie, Burparelli Samsam, Stinkasaurus Rex, Mister Sam Man McMuncher, and little chicken pot pie. Others are emerging daily but I think I have embarrassed myself enough here.

His brothers are a bit conflicted about this whole Samuel at home thing. One morning I called out to see if anyone wanted to learn how to feed Samuel and all three of them dropped what they were doing and came running like cheetahs. They love to hold him, feed him, play with him. At the same time, they are clearly none-too-impressed with the amount of attention Samuel garners. It is hard for them to understand that this is what it was like when they were babies too and that it won't always be this way. Despite our efforts, particularly those of their most amazing fun Daddy, the boys are learning to wait and to entertain themselves a little more.


Zachary cuddling Sam.

Jakey hanging with Samuel. (I know. It does look like Samuel is praying....)

Daniel feeding Sam, which is tricky as one must simultaneouly manage Sam's efforts to hold the bottle and tendency to put his fingers in his mouth.

The boys are also having to accept that some of their summer is a little different this year. Going places with Samuel is still rather challenging because of the combination of bottle feeding and NG feeding via gravity feeder. And Samuel being on oxygen means that some things are just out - like camping. Even if I thought I could handle an overnight or two out in the tent with this wee baby and his various supports, being on oxygen means that he can't be within ten feet of any open flame. Hanging around the campfire will have to wait.

But I don't think it will have to wait too long. Yesterday, the respiratory therapist and nurse from Home Care came out to assess Samuel. We reviewed his history - that his defect was visible at thirteen weeks gestation before lung development has begun, that he had stomach, bowel, spleen and liver up, that I had severe polyhydramnios, that he was in ICU for three months and had three bouts of pneumonia, a blood sepsis and a blood clot, that he was on oscillation ventilation, nitric oxide, eleven different IV infusions and that we spent weeks expecting him to not stick around.

Then we noted that his heart is perfect and that is pulmonary hypertension is self-resolving. I took out his medications for them - three little bottles, an iron supplement, an antacid, a diuretic. Listening to his lungs, the nurse remarked that his air intake sounded perfect on *both* sides. She said, "he did indeed grow a second lung and that is nothing but a miracle." Indeed.

I am currently teaching the same university course that I taught last year. Back then, I was newly pregnant and had to leave class a few times to be ill. This year, I am engaging with my students while our Samuel is home being cared for by his Daddy (with a little help from Nana, Boppa, and our lovely Aynsley). We are busy and exhausted and figuring out how to care for him in addition to our other boys. We are learning what to freak about and not. But life is beautiful.


Dad's Rising Star employs his new talent - pulling his nasal prongs down into his mouth. Ew.

Happy birthday, Chris. Sorry I didn't get you a card but hey, I birthed you four boys. What else do you want?!
Happy Sam.

Saturday, July 2, 2011

Home.

Our baby is home. Sweet Sam came home on Tuesday evening for real. On Wednesday, I woke up with my baby next to me and spent the whole day at home with all four of my children. I didn't do child care gymnastics and pack up my things and drive to the hospital and park and head down the long hallway to see my littlest boy. It was glorious.

I will back up a little since the week prior to Discharge Day was jam-packed. Samuel had that good news day with a thumbs up for his right ear hearing and an end to the twice daily shots of anti-coagulant. The next day, he had an echocardiogram to check his heart pressures. Pulmonary hypertension is typical of babies with diaphragmatic hernia and we assumed he would need some treatment for it for months or years. However, the cardiologist looked at Samuel's echo and decided that his pulmonary hypertension is resolving so nicely that the medication could be discontinued! Yay!

The pediatrician and dietician reviewed Samuel's growth and decided to stop the MCT oil that was providing extra calories and change him from the fragile-gut formula to a regular off-the-shelves formula. Samuel tolerated these changes brilliantly. At that point, he was on only two medications - a diuretic to help with fluids and Zantac to help with reflux. He is also on iron and vitamin D, which any normal baby may take as supplements. This is a far cry from our Sam who had so many medication pumps that he required a double IV tree, our Sam who ended up on methadone as a way of weaning off of fentanyl, medazalam and ketamine!

The second audiology appointment that week indicated only very mild hearing loss in Samuel's left ear. This may correct itself as he grows. The opthalmology appointment indicated that his eyesight has not been hindered by his rough early start; he is doing everything he should do and catching up
developmentally. Given all that Samuel went through with minimal stimulation, heavy sedation, oxygen blowing into his eyes, and treatments that had hearing and vision loss as potential side-effects, we were more than relieved to get these reports.

The opthalmologist did diagnose Samuel with ocular albinism, a genetic condition that is unrelated to his diaphragmatic hernia. It explains the nystagmus and photosensitivity that I have observed over the past several weeks. It means he will have some life-long visual impairment but we will have to wait to find out what that means for him.

The weekend before discharge, we were encouraged to do an overnight with Samuel so that we could take responsibility for his medications and care while still having the hospital bed to return to. We decided that we would have a 24 hour pass from Saturday to Sunday afternoon.

This spawned a whole nesting instinct that I did not get to enjoy the first time I was preparing for Samuel's arrival. I woke up on Saturday morning with a deep desire to go through the boxes of baby clothes and do laundry and fold tiny sleepers and outfits. Despite the graduate student papers needing to be graded, I began making lists of things that required immediate purchasing. Then Chris innocently walked by and I informed him that the family room needed painting. He asked when. WHEN?! Well, today of course. And the yard needed mowing and the garden was a mess. Good man that he is, he assessed the situation accurately and quietly began assembling painting equipment. Then he took our oldest child and fled the house to visit our youngest child at the hospital.

The pass was amazing, beautiful, lovely. Sam was happy. His brothers were well-behaved and adoring. Samuel even slept like a dream. I did not since it is hard to sleep while keeping one eye open and holding a tiny mirror up to your baby's nostrils. Sam'
s fabulous sleeping and self-soothing abilities suggest that I may actually have wrecked my other children with my constant cuddling and rocking and breastfeeding pursuits. Maybe they, too, would have been good sleepers if only for an extended hospital stay.

Sam lunching with Daddy. 


Sam playing in his activity centre. He particularly likes the snail with a mirror on the bottom. Apparently, that handsome little playmate in there is quite enjoyable.


Sam impersonating a burrito.
(And sleeping with blanket from Nana, shawl made by Auntie Denice and silkie from Auntie Gloria.)



Sam wearing his The Boss shirt, just in case he needs to get tough with someone back at the hospital.


On Discharge Day, I arrived in Samuel's room with an empty suitcase and waited for someone official to tell me it was really going to happen. He was snuffly and had a cough so a couple of cultures had been sent off and isolation precautions were in effect. I had a bit of a flashback to the masks and gowns of Samuel's three bouts of pneumonia and one round of blood sepsis down in the ICU. My mama's intuition said that Sam just had a cold and, while that could be enough to make him really sick, it wasn't something I wanted to get worked up about right away.

His pediatrician and I consulted and decided that today was still the day our Samuel would come home. I opened up the suitcase on the bed to start packing when the unit clerk called into my room, "Corinne, one of your older kids is down in Emerg." Um, seriously?! She said it was something to do with a head gash. That could only be Zachary.

One of the staff people walked me down so that I could get to the emergency department via the back hallway. I found Zachary in the waiting area with a friend who was listed on our emergency contact sheet. Zach was also accompanied by his teacher's husband, a Children's Hospital ER nurse who just happened to be at the school when Zachary fell on the playground. Alex was called upon to take a look at Zach's head and made the call that the gash needed glue or stitches, then he kindly agreed to come along to the hospital to help out.

I was so grateful for Alex being there. I was running back and forth between the ER department with Zachary and Unit 2 with Samuel and knowing that Zach was not alone meant a great deal to me. Alex shared stories of his various injuries and they discovered they were head-stitch buddies. They also had a rousing game of I-Spy while waiting. Zachary was incredibly brave when they froze and stitched his scalp and then Chris arrived and took him back to school for his last couple of hours of first grade.

Back upstairs, I managed to eat a few bites of lunch in between doctors, discharge plans, good-byes, and a quick visit from the home oxygen company representative to give us a portable O2 tank for the trip home. I fed Sam and put him in his going home outfit. I packed up the mountains of stuff we'd accumulated and traded cell phone calls with Chris as he tended to the big boys and I tended to the tiny boy and we planned timing for bringing home baby.

One of Sam's nurses thought some sunglasses might help him out in the world with his newly diagnosed photosensitivity. Thanks Chelsea. xoxo



Heading out of the hospital with our boy and his stuff.

I felt a little like I gave birth all over again on Tuesday, June 28. Samuel was finally ours. I had always, always loved him. In the first weeks when he was so fragile, I felt he was not really mine, that the Creator could still call him back at any moment. As well, I felt like he belonged to us but also to all those people at the hospital. This was not a bad thing. Those people saved his life and loved him and nurtured us. We needed them and I felt happy, even grateful, to share him. They will always be part of his story and part of our hearts. But now Samuel is ours.

It was seven in the evening when Chris and I loaded into the van the accessories of five months in hospital. We drove our Sam home to his brothers and Nana, found his food and gave his meds and snuggled him into his bed. He was exhausted and slept until midnight when Chris fed him and then until five a.m. when I fed him and then until nine o'clock. He spent his first full day at home napping, playing, eating, smiling, kicking, cooing until I gave him a bath - time to wash off all that hospital - and put him to bed for the night in his new stripey sleeper.


Samuel in his stripey jammies and cap from Auntie Lori.


I love the Children's Hospital. I am indebted to them. I am unbelievably grateful for the brilliance and compassion in that place. I am thankful for the truly amazing nurses and respiratory therapists who healed our baby and kept Chris and I from falling to pieces. I am thankful to Dr. Brindle who fixed him and Dr. Ferrin who helped him escape a trach and Dr. Gilad and Dr. Ross who feel like his honourary guardians and the other ICU and Purple Team docs. I am thankful for the physiotherapists and dieticians and occupational therapist who helped him stretch and grow and learn to eat. I am thankful for the volunteers who cuddled him when I couldn't. I am thankful to the child life specialist who made sure Jakey was welcome and entertained and who did anything she could to make my life there easier.

I am thankful for the parking people who said hi to me nearly every morning on my way by and asked me how my son was, the people who cleaned our room every day, the people who folded all those little washcloths into perfect rectangles. I am thankful for the awesome playground out back and Taco Salad Wednesday in the cafeteria and the amazing art work - much of it from children - all along the hallways.

Despite my thankfulness (and there is more than I could list here), I hope not to spend a whole lot of time there in the near future. I know there will likely be issues and even more surgeries. And we still have a million appointments. Samuel is being followed by the departments of surgery, respirology, cardiology, audiology, opthalmology, hematology, genetics, plastics and the head shape clinic. Respiratory home care will come to the house weekly to monitor his oxygen and growth and help me change his NG tube. There will be OTs and RTs and physiotherapists and dieticians. But I won't have to say goodnight to my baby anymore and leave him in the care of lovely nurses who are not his mama.

I am ready for whatever the next phase of Samuel's journey is. I know I have learned so much, even though I don't quite know what some of that is yet. I am stronger and smarter than I was a year ago. I wouldn't have invited this experience. But I wouldn't give it back even if I could. 

Welcome home, Samuel Meir. 


Sam.