Two weeks old!!

Our Samuel was born two weeks ago today. We prepared to have him be born and then die in our arms. Or to have him live for hours, maybe days, before we had to let him go. And we have had two weeks of his amazing little spirit with us. 

He was more stable today than he has been the last couple of days. He tolerated a bit more noise and was okay with the window blinds being up. I could hold his hand a little and touch his head but he was fussy about how I did it, would start to desat if I bugged him too much. He is still very fragile and sensitive.

I am sad that his big brothers have not been able to visit him since the NICU as we've limited his sensory world to try to help him settle. I know that Daniel and Zachary would like to see him and know where it is I go every day. Aside from Mum having lost 30 pounds in the last two weeks, I am not sure there is much to remind them they have just had a baby brother. Now this is likely just fine with Jacob; when asked if he'd like to visit his baby brother, he said, in his best threatening villain voice, "NE-VAH!! MWA-HA-HA!!"

Even with Samuel seeming a bit better than yesterday, it is hard to know if he is actually recovering from his stressful Friday and Saturday or if the medical intervention is doing all the work. Maybe some of each. And maybe it doesn't matter at this point. But Samuel really is receiving an incredible amount of medication, monitoring, and respiratory support. I let myself look at it all today and acknowledge that this is his "life support." These machines are keeping my baby alive.  He will either get strong enough to wean some of the support and go to surgery - or not. And if he goes to surgery, he will either survive and have the lung and heart strength to recover - or not.

I have lost track of the meds and I don't really look at the numbers on his monitors anymore. There is no way I can keep up with what the doctors, nurses and respiratory therapists know how to do for him. It is their job to look after him in these ways and my job to tend to his little being, to talk to him like only his mommy can, to make sure he hears my voice and feels my touch every day.

We have a fabulous new nurse, Eva. She has been nursing in the ICU for 20 years and the wisdom of her experience fairly oozes out of her not quite 5 foot tall self. She is the perfect blend of loving and matter-of-fact for working in this intense environment. And she took on nurturing me a little too. She had some very practical input - without being preachy at all - about taking time at home to rest and be with my other children, especially while Samuel is in the ICU getting one-to-one nursing care. She also made me take a coffee break this morning and my friend Denice declared that anyone who can successfully boss me is worthy of respect and awe. So respect and awe it is, Eva. We are lucky to have her caring for Samuel for another two day shifts.

Eva also managed to connect me with a family who had their baby in the PICU for two months after he was born with CDH. I had been hearing about this family with a CDH baby who was very sick and not expected to survive but who is now 10 months old. Elliot went home on oxygen at 6 months of age and is a bright, happy little guy even though he still has lots of health challenges. I chatted with his parents for over a half hour and felt honoured to hear their story and see some photos. At the same time as their success buoyed me, I felt totally overwhelmed by all that they had been through. My now familiar dance of hope and fear kicks into high gear if I let myself go too far beyond today.

I wish I could better express my gratitude for the support that we are receiving during this time. There is hardly a day goes by that we don't have food delivered to us. Yesterday I was sitting in the van waiting for Chris to collect the boys from school and a mum knocked on the window and presented me with a still-warm pot of chowder. There are muffins on our doorstep and entire meals dropped off with love. The other day I got an enormous gift basket from my friend Lori's church mums, women who are praying for us and supporting us even though we've never met. A lovingly prepared "ICU Survival Kit" was delivered to me at the PICU last night. There are emails, hugs from friends and neighbours, calls with well-wishes, and comments here on the blog.

I take all of these things into my heart. The emails go into a folder where I can read them again and again when I need a boost. I can't properly thank people or respond personally as I would like to. There are no cell phones (including text and wi-fi) to be used in the PICU so I need to leave him to be able to call or email. When I leave, it is to rest or eat or be with my big boys. So I am falling behind on keeping in touch and have to trust that people will just know the enormity of my care and gratitude.

Tonight I got to have a bit of a mommy wrestle with each of my boys. This is very different than the full-on daddy-wrestle situation which is a mite too violent for me. The mommy wrestle involves a lot of tickling and pinning down and smooching and ultimately having their little bodies pressed into me while I yum them up. I have not been feeling well enough to do that for a few months now. Zachary paused to ask me, "Mommy, is your tummy okay for this?!" but then he was quite delighted to connect in this old way. I am so blessed to have these four amazing boys, three of whom are willing to compensate for the snuggling that the fourth can't yet participate in.

A Valentine from my 10 year old niece. Thank you, sweet Quinlyn.

Notes from Zachary.

Our beautiful two week old Samuel (with a 'bonnet' from Nurse Eva to help him feel a bit more contained from stimulation).