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!