Samuel's first week (!!) of life

Today at 3:20, my little boy will be a week old. He is changing a little each day, finding ways to let us know that he is a bit stronger than the day before. Last night when I went to visit, he was more responsive than I have seen him. When he is unhappy about something, he scrunches up his little face and waves his arms - something a "normal" baby would do. Even a couple of days ago, he would indicate his discomfort by dropping his O2 saturation levels and setting off the alarm on his monitors. 

The goal at this point is to get him strong enough to be transported to the Alberta Children's Hospital for surgery to move his organs back to where they should be and to repair the diaphragm. This requires that he is able to remain stable on less oxygen. He was up to 100% oxygen levels but is now down to about 40% - YAY! If he can hold stable, they can wean him off of the nitric oxide that is keeping his blood vessels open and take him off the oscillating ventilator in favour of a conventional ventilator. The surgery itself is still very risky so they want him to be as steady and well as possible.

After that, he will be at the Pediatric ICU at the Children's Hospital or he may possibly be transported back to the Neonatal ICU at the Foothill's Hospital. We are incredibly fortunate that both of these amazing hospitals are within 10 minutes of our house. It is expected that Samuel could be in hospital for up to a year if he is able to negotiate the rough waters ahead of him. They do x-rays and echocardiograms regularly. However, we will not know until the surgery just how much lung he has and how the heart and digestive organs have fared thus far.

I will back up just a little....

Samuel had about 12 hours of "honeymoon" period after his birth. He was hooked up to the minimal respirators and monitors and was stable. He even was breathing room air for a while with no additional oxygen at all - quite miraculous for a baby with a very small lung who we anticipated might not survive the delivery room.

In the middle of the night, he started to act more like a baby with a diaphragmatic hernia. His blood pressure became erratic and they tried one medication, then another, to stabilize the pulmonary hypertension typical of CDH babies. After a few hours of different efforts, his blood pressure started to even out. Whew.

Then he started to desat - meaning that his oxygen saturation levels would decline. Again, this was usual for CDH babies but scary for us as his parents. Most alarming was watching the pre-ductal O2 sats drop and knowing this meant a decrease in oxygen to his brain. There were medications and ventilators and oxygen levels to play with here as well and they assured us that they would not let it drop to any critical level. This continued throughout days 2 and 3 for Samuel with constant alarms going off, turning the oxygen up, providing a little more of this medication or trying that one, monitoring blood gasses, trying another type of ventilation. Day 4 started to be a little less dramatic but not yet reassuring.

I was still in hospital at this point, recovering from the surgery and, honestly, from the pregnancy itself. The aches and pains of the last 2 months of pregnancy resolved almost instantly when Samuel was born and I no longer had the weight of my baby and his polyhydramnios swimming pool to carry around. I slept as much as I was able - I was *exhausted*!! Often I couldn't sleep because I would startle awake feeling like something was missing. Of course something really was missing! So that is when I would walk down the hall and over to the Neonatal ICU dragging my IV pole to visit my baby.

On his second night of life, I was with him until about 1:30 in the morning. He was going through a period of scary desats, his levels dropping dramatically and the alarms ringing and then seeing if he would come back up on his own or if something needed to be done for him. His nurse, Jasmine, was so loving towards him, calling him sweet names and cooing to him and trying to make him comfortable.

What seemed caring to us appeared to be uncomfortable to him; as I watched, he desatted more when he was being handled in any way at all. He didn't want me to touch him or sing to him. He didn't like her cleaning his little mouth. He got particularly upset when a group of nurses were talking and laughing nearby. I mentioned to Jasmine that I thought he might be exceptionally sensitive to noise and light. This is typical of all sick neonates but he did seem a little extra reactive. Maybe less intervention was better for him - and meant that we didn't have to keep giving more medicine and oxygen to keep him comfortable.

Jasmine was very responsive to this and the neonatologist supported it as well. Then his day nurse, Barb, made it more formal that he was to receive the minimal handling. Diaper changes and assessments and interventions were all to be done very slowly, giving him time to recover if he seemed agitated by it. The lights were dim and there was a blanket over his isolette. The nurses, doctors and respiratory technicians caring for him did so in whispers with minimal light. Rounds and reports were done away from him so that he didn't hear a lot of voices. Since then, Samuel and Barb have developed a little crush on each other and she is his primary nurse, meaning that she gets him whenever she comes on shift. I am comforted by the love that is offered there in addition to the medical care.

Very slowly, Samuel has started to desat less and to recover on his own. Certainly, the oxygen treatments have been factors in this. He was put on nitric oxide to help open his blood vessels and switched to an oscillating ventilator. This ventilator vibrated his body very gently to help keep the lungs open to more oxygen without providing more pressure. At one point, he was getting 100% oxygen and we knew this was not great news; if he struggled there was no additional oxygen to be provided and they would have to go to yet another level of treatment. And we knew that such intensive oxygenation therapies could create other kinds of difficulties for him.

I worried that we were heading down a path of more and more treatment, that it could be hard to get off this train. But worrying was just what I did best at this point. There were so many tubes, so many machines, so many medications. My mind was still foggy from my own pain meds and my emotions were running high to see my sweet baby in this condition. Every time I came to visit him, there was some new technical information to absorb. So I just sat with what was reassuring: he was getting incredible attention and medical care and there was nothing more I could do for him except show up with love. More surrender.

Everyone told us that those first 72 hours were just like this. Samuel was letting us know what he could do and what he needed help with. Our job was just to listen to him and provide support where needed. I was reassured by the respectfulness of this approach. Dr. Carlos spoke to Chris and I whenever we came in and his humble, gentle wisdom was calming. On the morning of day 4, I touched Samuel's foot and whispered that his mama was there. He tried to open his eyes. I pulled back gently and then did it again. He tried to open his eyes again. I started to cry from the beauty of that simple connection and Dr. Carlos came over to me. I told him what happened and he said, "Of course, Mama. He is alive in there. He knows who you are and he loves you!"

On Saturday, I was discharged from hospital. I spent a couple of hours that afternoon with Samuel and then went home to my own bed and my big boys. My goal is to visit Samuel twice a day so that I can be there in the daytime to meet his nurse and talk with the doctors and then also go in the evening to meet his night nurse and say goodnight. He loves for me to touch him now and this is comforting to me.

His nurse Lori worked with me on ways to "hold" him through the openings in his incubator even though I can't pick him up as I so want to. I put his hands in mine and tuck them against his chest and then I hold his feet so that he can press them against me just as he would have pushed his little feet up into my rib cage in utero. They keep having to move his IV or attach other monitors and so I modify our holding to accommodate the new soup of wires around him. Chris sings or reads to him and this is our way - mama's touch and daddy's voice. His little body goes calm and his numbers are high and steady.

It has been incredibly hard seeing my baby like this. Sometimes I let myself think about how this might turn out... what if he dies or has cerebral palsy or is blind. Sometimes I let myself think about how this should be... I should be able to hold him, nurse him, change his diaper... I don't know what his cry sounds like because he is intubated and can't make noise and I don't know what colour his eyes are because he is too sleepy and swollen to open them. Sometimes I let myself think about ways that this could have gone differently... what if I had been able to keep him safe in my belly for 2 more weeks.

The what if questions all take me down the rabbit hole into fear, grief, anguish. And so I am working at just being where I am, meeting him where he is, being in THIS experience without longing for something else. I love my baby. I want him with a fervent love that I have known only for the three sweet boys at home. But I have to let Samuel do life his way and try my best to walk alongside in love and grace. This surrender stuff is hard!

I delivered him in perfect condition... the wires and the bad haircut are courtesy of the NICU staff. :)

p.s. I want to say how much I appreciate your comments and your emails. Even if I don't get a chance to respond, it means the world to us to know the kind of support we have out there. If you have questions about Samuel, it is okay to ask and I will try to answer them here or in email. Thank you all for the beautiful care you are surrounding our baby with.

love
Corinne