Friday, February 25, 2011

Recovering

I don't have a blog entry in me tonight - wow, this really is a special kind of tired! - but don't want to leave things hanging either.

Samuel was wheeled out of his ICU room at 4:30 this afternoon and wheeled back in just after 8:00 this evening. The anesthesiologist said he did really well right up until the very end when they needed to bring him back to ICU, then he "threw a bit of a snit" (that's my boy!!) about having to make the transition. Moving him back and settling him into ICU again was a bit stressful for him and consequently for Chris and I as well. Samuel is resting peacefully now.
The surgery itself is breathtaking. Samuel had virtually no diaphragm at all. His stomach, large intestine, small intestine, liver and spleen were all up in his chest. He has one neat incision about 3 inches long just under his left rib. Through that hole, they pulled all those organs from his chest down into his belly, then built him a diaphragm and stitched it to his rib. The surgeon says he actually has a decent lung on that left side where everything was in addition to the right lung which they already know is adequate or he wouldn't have made it this far. His heart is already moving back towards where it should be.
The next few days are, as everyone reminds us, the "touch and go" phase for Samuel. Of particular concern is that his spleen bled a little when they pulled it down into his abdomen. It was squished and had adhered to some other tissue and they are not sure how fully it will recover. They will be monitoring for internal bleeding and there is a chance that he will have to go back to surgery to have his spleen removed. Samuel is already at risk of infection and is so very little; to lose his spleen and all its immune functions would be extremely hard on him at this point.
They were able to fit all of his organs into the abdomen without leaving an opening post-surgery. They did not want the added infection risks of that opening and then the subsequent surgery to close it if he could accommodate the organs now. So they will be watching him for pressure on his abdomen, especially making sure those organs aren't pressing up on his new diaphragm. There is a long list of other things they will watch over the next few days as well but I have neatly sequestered those away in order to minimize freaking out tendencies.
He looks beautiful. It is amazing. I am in awe and filled with gratitude. I say thank you to everyone who comes near him, over and over. I caught myself looking at our surgeon as she walked away tonight. She is this 30-something, brilliant, kind, down-to-earth woman and I caught myself trying to confirm that her feet actually touch the ground. Seriously.
Such an incredible thing just happened to our not-even-7-pound baby boy. Chris and I are here with him at the hospital and will be through the night and then in shifts over the next several days. I keep having these enormous, spontaneous exhalations and thinking "man, how long have I been holding my breath?!" But then I do it again. I don't expect regular exhaling to begin again just yet.

Off to surgery

Samuel was cleared to go to surgery this morning at about 11:00 but they weren't sure they were going to have the slot in the operating room. Felt awful to think that he was finally being given the green light and yet we might still not get there. They told us that we would know something by 2:00 p.m. and that, if we hadn't heard anything, it was likely off for today.

Chris and I waited. And waited. At three minutes to 2:00, someone stuck her head in the door to his room and told us that they would be coming to get him within the hour. Our baby Samuel is going to surgery. I will visualize him surrounded by light and cradled by love and many prayers. And I will get to work on that letter advocating for the hospital to carry a liquor license. I mean, seriously!!!

love
Corinne

Thursday, February 24, 2011

Tomorrow... maybe

On Tuesday, we thought surgery could be 'tomorrow... maybe' and then Wednesday came and no surgery. So they spent yesterday working to optimize his numbers and monitoring how he was doing and we were told surgery could be 'tomorrow... maybe.' We arrived at the hospital this morning with anticipation. I stood and listened as the team did rounds on our Samuel and the end result was 'tomorrow... maybe.'

The good news is that the 'tomorrow' in this case sounds more definite than it has. That's about as certain as anything can be with our Samuel. Cardiology and surgery came to speak with Chris and I, something they haven't really done since before the infection sprouted last Friday night. The tone around sending him to surgery is more excited and positive and less tentative. That said, we have learned that things change in the blink of an eye and we need to be ready for anything. 

The feeling now is a little like when we were waiting for Samuel to be born. The surgery has to happen. It is an inevitable next step, whether tomorrow or soon after. It is a good thing that he get a chance to show us what he can do with his insides not all mixed up. And yet it is risky, this next phase. He might not come out okay. He might die in the operating room or he might be too sick to recover afterwards and we will lose him then. Or he might rally and show us how strong he is - just like he did in the last operating room he wasn't expected to make it out of.

I cannot tell a lie... I am too scared to be scared. I am in auto-pilot, feeling kind of nothing, not really able to talk. I am exhausted and my body is choosing now to let me know that it might just want a little rest and recovery after having come through a really hard pregnancy and major surgery. So this evening I rest at home with boys all around me - Daniel playing Nintendo next to me, Zachary on the floor drawing pictures of our family of six under a protective rainbow, Jakey running in and out with various pretend weapons, Chris warming up the dinner dropped off by a neighbour. My littlest boy rests in his hospital bed with capable nurses who love him.

I dreamt last night that I was walking through markets and visiting castles in Italy. Things kept breaking and I kept finding myself on my knees picking up pieces of coloured glass, broken tile, bits of wood. I gently collected all I could each time and this kind man kept appearing and saying calmly, "It's okay, we will fix it. We will fix it." Fragility, hope, comfort. We don't exactly need to call Dr. Freud on this one, do we.

Tomorrow morning there will be more blood work before they give the all clear. The cardiologists, surgeons, intensivists and anesthesiologists will all have to meet to agree that he is ready and then surgery would likely take place mid- to late-afternoon. I will make a quick post to the blog when Samuel goes in... tomorrow... maybe... :)



Wednesday, February 23, 2011

Waiting some more...

Our lovely little Samuel turned three weeks old today. I sang happy birthday to him but it made me cry. So I sucked it up and then sang it again. For the love of pete. What child wants hear his mother cry through happy birthday?!

Since Samuel has been so stable, the medical team has worked on gradually weaning him back from several of his supports. When I left tonight, he was down to 40% O2 ventilation (which has been as high as 100%) and down to two on his nitric oxide (from 20) without destabilizing at all. He's tolerating all handling and suctioning, although still under moderate to heavy sedation. The nurses and respiratory therapists who were in and out of his room were all thumbs up and "he is doing GREAT!" I can feel them rooting for him, wanting him to move on to the surgery.

Samuel seems stronger than ever and the blood cultures that monitor his sepsis have come back negative for two days in a row. He seems to have fought off the staphylococcus nasties! It will be up to the anaesthesiologist tomorrow morning to decide if he is ready to go to surgery. Unless he destabilizes or shows some renewed signs of infection, I am feeling hopeful that they will give him the green light for this next step.

The nurse this morning bathed him and gave him fresh bedding (Nana's blankets!) and we put some lotion on his dry skin. Samuel is all cleaned up and more handsome than ever. He is still covered in probes and IVs and wires and, of course, the tubes down into his lung and stomach. The NICU haircut and the PICU scalp deformity (his head is pretty wonky lookin' from the swelling and lounging about) are not really the hottest looks in neonate fashion. And any other guy who offered as little affection and communication as Samuel does would not earn a second date. So how is it that I am so incredibly smitten with this little man?!

I've been reading Pema Chodron's "When things fall apart: Heart advice for difficult times." In it she says, "Like all explorers, we are drawn to discover what's waiting out there without knowing yet if we have the courage to face it." Her words have inspired me to take a new tack with my fear. It was not working to try to keep blocking it out. So I turned and faced it, said, "fine then, come along, but we're doing this anyway."

Tuesday, February 22, 2011

Still waiting...

Sunday was a bit of a rough day for Samuel but he started to settle out by evening and has been stable today. The plan over the weekend was to go back to reducing all stimulation in Samuel's world. As it was explained by his doctors, any kind of excitement causes our blood vessels to clench and this is too hard on Samuel who already has such severe pulmonary hypertension. So we went back to heavy sedation and the "no talk, no touch" rule. They worked on adjusting his medications so that he has no responses at all. When he must be handled for assessments or suctioning, he is given extra sedation and sometimes also a paralytic. His body needs to have nothing to do but deal with the infection and get strong. The ventilator and his various medications do all the work.

This is tough as his mama. The only thing I have to feel connected to him are his little finger squeezes and the sweet facial expressions he makes from time to time. For now, there is no more holding hands, no more singing and reading, no more talking to him as he tries to open his eyes. I know it is what Samuel needs right now so it's okay. Sometimes the helplessness I feel makes my heart ache. Sometimes it makes me a bit nutty and I go looking for little things to "do," like obsessively making sure the door stays closed when people are coming in and out of his room. But it is okay.

The lovely Auntie Jenny stopped by on her way through Calgary the other day and took me for a cafeteria slushie. It is no Coke Slurpee - have not had much chance to feed that addiction of late - but I appreciate the hospital's 100% juice slurpee-esque efforts. She said, "how are you doing this?!" and I said honestly, "I don't have a choice." If it were my choice, my baby would be in my arms and I would be changing his diaper and feeding him and smooching him up. Samuel has a different start in life. But he is still here, my strong, surprising, light-filled Samuel.

Being in the Intensive Care Unit at the Children's Hospital is full of its own lessons. As sick as Samuel is, he is not the sickest child in the ICU. There is a beautiful blonde five and a half year old girl in the next room and last week she was diagnosed with stage IV cancer. His neighbour before that was a little child who died the night after Samuel arrived; Chris and I felt the spirits all around that family and the next morning, the room was empty. The child on the other side of Samuel was brought yesterday by STARS Air Ambulance and I tried to imagine how terrifying that would have been for his mum. This is a place filled with extremely ill children and extremely worried parents. I have widened my prayers for Samuel to include all of these children and families. Suffering is not selective.

I think about the medical team here, these people who have chosen to work in what is arguably the most intense place in the whole hospital. It is a special kind of person who has the technical expertise to deal with all of these machines and medications and also the humanity to deal with such stressed out families and sick children. Many of the patients are under heavy sedation, just like Samuel, and I think of the compassion involved in remembering that there is a little person inside each still, silent body.

Each time I come into Samuel's room, I am aware of the little things the nurses do to make him comfortable - using a soft rolled blanket to prop up his tiny swollen feet or tucking his stuffie under his arm as he sleeps. In addition to caring for him, they offer their care to us. They ask how I am, if they can get me anything. They answer our questions and are comfort in those moments when sadness and fear overwhelms. Each day when I leave, I ask them to love him up a little extra while I'm gone. As nervous as I was to leave after our ten days in the NICU, we have now had ten days in the PICU and have found our angels here as well.

Samuel had a very stable night last night and was stable all day today. The plan to keep him heavily sedated seems to be working. Today he tried to open his eyes just a little and gave me a sleepy grin. His nurse and I delighted over this for a moment and she pointed out the little pink lines in his breathing patterns on the respirator; these were the breaths he was initiating on his own. My Samuel was taking his own breaths. It was so beautiful and yet I knew he shouldn't be working against the ventilator. More sedation. Rest, sweet baby.

The only hiccup now in sending Samuel to surgery is the staphylococcus infection that showed up in his blood cultures. His doctor explained that the risk of sepsis is high because of the many lines that patients like Samuel have in their body; staph grows naturally on our skin and these lines provide a route for the infection to sneak into the bloodstream. If the infection is not cleared from this first round of antibiotics, the next level of treatment will involve removing all of Samuel's lines so that they can be sterilized and re-started.

Another blood culture was drawn tonight at 8 p.m. and we need to wait at least 24 hours - maybe 48 - to know if it is clear. I am hoping so hard for nothing to grow in that culture, for us to find out that his little body is infection-free and strong and that the doctors will consider him ready to go to surgery.

I am also hoping for the strength to know how to balance this hospital experience with the home life that my big boys still need. I asked Zachary today how he was doing with everything and he told me, "Well, sometimes I am sad because Samuel is sick and sometimes I am angry but I don't know why and I am also happy because Nana and Boppa are here and then I am sad some more. Everything is all just kind of mixed up right now." My wise six-year-old Zachy. That pretty much sums it all up.

Sunday, February 20, 2011

The waiting game

Chris and I arrived at the hospital before 9 a.m. Saturday morning in hopeful anticipation of surgery day. We were holding Samuel's hand when we saw the doctor's collecting in the hallway outside his room. By the time we went out into the hallway to get more information, they were already dispersing. The doctors told us that surgery was called off for today. Samuel appeared very stable, maybe the strongest that he has been to date. His fever had not continued past that one high reading. However, one of the numbers on his blood work came back as a possible marker for inflammation. The anaesthesiologist and the intensivist agreed that Samuel should not go to surgery unless it was certain that he didn't have an infection.

Since Samuel was doing well otherwise, the medical team planned to use the day to let him rest under sedation and see if they could wean his requirements for oxygen and nitric oxide. Maybe this was his chance to be even stronger for surgery. Maybe it wasn't a coincidence that he spiked that fever at the same moment his doctors were giving the green light to surgery. Maybe we were meant to know he wasn't quite ready.

Chris and I decided to wait for rounds to know more about what the approach would be. Samuel had a new doctor because of the weekend and, while Dr. Gilad is incredibly experienced and trustworthy, we wanted to be part of the process as much as possible while he got to know our Samuel. Our sweet, capable nurse Laura had some magical ability to calm and reassure us and we found ways to enjoy the quiet time together with our baby. Samuel opened his eyes and made some sweet sleepy faces for us.

Waiting for medical rounds to get to us took more than five hours. By then, the initial results of his lab work had come back indicating that there was staphylococcus bacteria in his blood cultures. They could not say what this meant in terms of illness or planning; we have to wait for the final lab report to come back Sunday afternoon. Samuel started on IV antibiotics. Surgery is on hold again.

If Samuel comes back all clear on the lab cultures, surgery could be as early as Monday. As Monday is a holiday here, there is a chance that they would opt to wait that one extra day so that they have all hands on deck for his surgery. At this point, though, we can't even talk about a new plan for surgery until those final lab results are available and we know if Samuel is dealing with sepsis.

Our big boys came back from two nights at Nana and Boppa's house. Zachary has a high fever and his breathing is fast and laboured. I lay next to him as he sleeps and I listen to him breathe. Everything feels a little extra scary right now. The fear is big enough that I think it could swallow me up. It calls to me and I turn away, cover my ears, sing "La-La-La! I can't hear you!" Wait. Breathe. Surrender.

Come on, our sweet Samuel. We can do this.

Friday, February 18, 2011

Surgery tomorrow??!!

UPDATE: It is Saturday morning and we are not going to surgery today. Samuel's fever has settled and he is more stable than he has ever been. They decided to give him today to coast and get strong. His lab results will come back late this afternoon and the doctors will confer then about whether he can go to surgery tomorrow (Sunday) instead. All is well... Just more waiting.
Love
Corinne (via iPhone from Samuel's bedside)

++++++++

Samuel has been reasonably stable the past couple of days. I am in awe of his medical team who seem to balance knowing all the interventions that are available to him with attending to what Samuel tells them he needs. Earlier in the week when he was struggling so much, they responded by adding this medication, tweaking that monitor setting, adjusting another support. Ultimately, they decided it was too much fiddling around for him. Babies with diaphragmatic hernias are notorious for not liking change and fussing. They are just very sick little people - and I know that I wouldn't much like noise and messing around if I were that sick! 

So the team has been trying to leave him alone as much as possible. There is still an incredible amount going into his care and, in addition to the usual, they have had to tweak his pain medication, up his nutrition needs, and deal with some swelling. The feeling now is that Samuel is as stable as he is going to get and it is time to go to surgery. After much discussion between his surgeon, cardiologist, anaesthesiologist, and the chief intensivist in the PICU, it was decided to schedule Samuel for surgery Saturday morning.

These doctors are all willing to give up part of their weekend to make sure that they access the optimal window for Samuel to have this surgery. His condition is not as strong as they would like to see but he is not really getting any better at this point. Waiting longer is unlikely to help Samuel get any stronger and he may start to have other issues for them to deal with, such as infection or increases in swelling. Going to surgery now is a calculated risk.

As soon as it was decided that Samuel would go to surgery tomorrow, he spiked a fever. This is currently being monitored and treated with Tylenol. (Finally! Words like "fever" and "tylenol" that I actually understand!) If his fever abates, we are still on for surgery tomorrow morning. If not, we must wait until his cultures come back to be sure that he doesn't have an infection.

The surgery is two to three hours long. There will be two surgeons performing the procedure along with anesthesiologist, cardiologist and a host of residents, nurses and respiratory therapists. The procedure involves pulling Samuel's intestines, stomach and liver back down into his abdominal cavity where they belong. Particularly with the liver up, there is some complicated reworking of blood vessels. They will likely need to leave part of the abdomen open after surgery and then will close it later when the stomach and bowels have had a chance to expand into their new home.

With the abdominal organs moved out of the way, it is hoped that Samuel's lung or lungs will have a chance to inflate on their own and that his heart will shift back over to the left side of his chest. This moment is what I will visualize for our wee baby while I am waiting and trying not to freak out. Who am I kidding?! I will be freaking out. I may distract myself by writing a letter arguing for the hospital to pursue a liquor license.

The diaphragm is then repaired. In some cases, the hernia is small enough that they can stitch together the existing diaphragm. Since Samuel has stomach, intestine and liver up, it is certain that his hernia is too big for that and a patch will need to be used. Patches are often made out of Goretex. (That's right, Goretex. You will never look at your ski pants the same way again.) They are now using a substance with a fancy name that loosely translates as "pig intestine." (That's right, pig intestine. You will never look at your morning bacon the same way again.) The pig intestine is an organic substance and more easily grows with the child so there are less likely to be problems and additional surgeries down the road. 

I have no words for how Chris and I are feeling. We chose to come home and eat supper and rest as we may be at the hospital with Samuel for more than 24 hours starting tomorrow morning. But I can't really imagine sleeping tonight and suspect we will go back to the hospital for another peek and a goodnight finger squeeze. Today feels rather momentous knowing that tomorrow could bring such a milestone in Samuel's life. The ups and downs to date have prepared me for the surgery being called on account of fever. But we have prayers and crossed fingers and good thoughts dedicated towards him being ready for this next step.


That's a lot of action for our teeny little baby.
Mama and Daddy pray for protection of Samuel's heart and lungs.

Samuel comforted by mama's hand, prayer beads, and his stuffie hand-made by Auntie Denice.
Samuel's tiny toes.
Samuel's wee perfect fingers. Mama does lots of handholding and relishes every little squeeze.

Thursday, February 17, 2011

Easy does it


Samuel remained stable today and we are seeing some improvements. He was able to wean from some of the interventions that have have gotten him through the past few days. He is down on the dopamine that helps his heart and he is almost off the nitric oxide that helps his blood vessels open to reduce pressure. They took him off of the medazalam that was sedating him so he is just on fentanyl for pain relief and that is sedating in its own right. It is odd to think that my wee baby is already addicted to fentanyl and will need to be carefully weaned when the time comes.

Having Samuel less sedated was good for my mama heart as I knew it meant we were heading in the right direction. I was elated to see the signs of life returning to my baby. He makes little faces as he sleeps and he squeezes my finger when we hold hands. He even opened his eyes for about ten minutes this afternoon and we had a mother-son love-a-thon. I know, I know, every mother says this, but he is sooooo beautiful. I sit and study his little fingernails and his nose and belly button. I tend not to notice his swelling and even the tubes and wires are a bit 'normal' to me now. The only way that you can tell from the outside that anything is wrong inside is when Samuel gets the hiccups; we can see his diaphragm convulsing on the right side of his chest but not on the left.  

The goal now is to get Samuel on the least amount of support he needs to still be doing well. There is ongoing gentle tweaking of the different supports and then watching his numbers to see whether he is okay with the change or not. It is essential that Samuel be using the minimal support he needs before heading to the operating room so that there are more options to intervene during his post-surgical recovery. It is expected that he will decompensate for several days while his body deals with the trauma of general anesthetic and a major organ reshuffling.

He did have some blips today. He desatted slightly when he got an injection of RSV antibodies in his tiny thigh but he was able to recover almost completely on his own. Samuel's severe pulmonary hypoplasia qualifies him for the program that offers protection against RSV, an illness that presents as a cold in a healthy person but that could kill a baby like Samuel. It is terribly anxiety provoking to know that an otherwise innocuous virus could be my baby's demise after all the other fighting he is doing. I try not to think about what my other boys could bring home from school; it makes me want to put my whole family into a bubble.

Samuel also desatted when his brothers came to visit him. I don't blame the big boys because they were really well-behaved and only stayed ten minutes. Besides, Samuel can pull this desatting thing any old time if he badly needs an airway suction. But it is possible that he was taxed by the visit even though he was tolerating stimulation much better today. Maybe, Samuel recognized his brothers using whispering sweet voices and it was just too much of a shock after nine months in utero hearing them yell and fight. Indeed, if I think of it that way, I might just have desatted as well! The nurse and respiratory therapist tended to the desat and I high-tailed it out of there with the boys, who were happily eating green popsicles from Eva. 

Dr. Brindle came by this evening to talk about taking Samuel to surgery. That there is a timeline for this on the table again is promising. I am feeling very cautious after our bumps in the road this week and I just want to know that our sweet baby is as strong as he can be and ready for this next critical step. 


My 4 boys together for the first time. Jakey loooves his new baby brother and is thrilled with having been displaced as the youngest in the family. You can clearly see his delight and excitement.

Jakey brightens: Wait, did someone say I get a popsicle?!

Daniel is fascinated by the technology aspect of his baby brother's early existence.

Zachary goes in for a better view of wee Samuel.





Wednesday, February 16, 2011

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).

Tuesday, February 15, 2011

Samuel’s ups and downs

We’ve been told that babies with diaphragmatic hernias tend to be incredibly labile so that they can appear very hopeful and strong and then go downhill very quickly. That is what we are experiencing with our Samuel now.

Saturday started out as a great day for him. He was stable with all good numbers even after the anticipated trauma of the transport on Friday. Our nurse, Cody, made good on his promise to make sure that Samuel and I had a cuddle. It took him and the respiratory therapist together to manage all of the tubes and machines so that Samuel could spend some time in his mama’s arms. Settled into the chair with my baby pressed against me, the rush of hormones in my body was AMAZING. I exhaled as if I’d been holding my breath for days. My pupils dilated. My whole body relaxed. I was officially stoned on Samuel.

Cuddling with my sweet Samuel for the first time.

More cuddling and an important mother-son chat about lung development.

I held Samuel for almost an hour until his doctor came to put in the new lines. This was a surgical procedure and I knew it was better that I didn’t stick around to watch. My friend Lori had come to visit and to make sure I was eating and doing okay. She and I went to snack and talk and cry together in the bright open cafeteria of the Children’s Hospital.

(The food really is rather good here as hospital cafeterias go. It is still terribly expensive and Lori and I did take issue with the fact that they don’t sell “real” Coca-cola because it is an unhealthy choice but they sell all the juices with just as much sugar AND they sell the diet sodas with all of that horrific aspartame! This concludes my ‘hospital food’ rant for today’s blog entry.)

When Lori and I returned, the doctor was done and off to see another family, Samuel was sedated and Cody was cleaning up the soup of tubes. We were told that Samuel was doing amazingly well and doctors were talking about the possibility of surgery on Monday or Tuesday. On rounds, Samuel was being compared to another diaphragmatic hernia baby who was up on the “good” unit being weaned off of blood pressure medications and learning how to take food. That baby was a month and a half old. Our hearts soared.

I went home for supper and Chris came back to see him Saturday evening and meet the night nurse, Marie. Her experience and nurturing approach felt comforting right away. All was well. I went back to the hospital the next morning. I remember walking down the hallway to the PICU and feeling just a little bit brave, like things could be okay.

I arrived to a sign on Samuel’s door reminding people to be quiet. His blinds were drawn and he was wearing tiny ear plugs to try to help decrease any stimulation that might agitate him. His nurse, Jessica, was a young, sweet-voiced woman not afraid to take on a mama bear role; the RTs checked with her first before they did anything in his room and she gently kicked out people who spoke near him in anything but a whisper.

Samuel had taken a downturn in the middle of the night. His lung and heart pressures were up and the various interventions were not helping. They were changing medications and tweaking machine settings. Blood gasses were being drawn sometimes hourly. He was sedated to keep him still and quiet in the hopes that this would help relieve some of the pressure on his heart. The tone of his caregivers had shifted from hopeful and amazed back to “this is a very sick baby.” His doctor that day explained what was happening in his heart and was blunt in letting me know, “this is how the diaphragm babies die.”
I didn’t hear anything she said after that. It wasn’t that my thoughts ran away with me or I started to get upset but more that my own breathing and swallowing suddenly consumed all the energy I had. I made my voice as confident as I could but it came out small and shaky. I said, “if there is a point where we need to discuss letting him go, I want to know that you will talk to us.” She promised she would, but said, “not yet.”

We think what happened is that Samuel did not have the reserves to handle all the procedures on Saturday. He had a femoral line put into his groin – the surgically placed central line that we’d been waiting for. A new arterial line was put into his foot. The umbilical lines that had offered nourishment and medications since his birth were removed. The two IVs in his head were taken out. The tube going down into his stomach dislodged so they had to put it back in but then it didn’t work and they had to do it again. There was a bunch of cleaning up around all of this – removing adhesives from his skin and hair and re-taping and jostling, all things he was handling well up until this point. And all of this was in addition to the usual suctioning and blood tests and such.

Once the anaesthetic wore off, Samuel was uncomfortable from all of this just as any of us would be. We would have a bit of pain medication and bounce back but he is too sick for that kind of recovery. So he has destabilized and that remains so tonight, more than 48 hours later.

It is disappointing, to say the least. I try to be positive and appreciate that he let us know the limits of his strength. If the procedures from Saturday made him this unstable, he would not have tolerated going to the operating room. Our plans for surgery early this week are over; plans for surgery at all are on hold. We just wait and let Samuel communicate with us what he can do and what he needs help with. As Dr. Carlos at NICU always said, he is the boss.

I am reasonably peaceful about the waiting and letting the medical staff do their thing. (I am sure those who know me will take a moment to marvel at the modification of my control-loving nature.) My practice of surrender continues and I know that there is very little I have control of at this point.

What is harder is when I feel like I can’t connect with him. I need to touch him and be close to him. I am unsettled and agitated when I am away from him for long periods. I have physical pain in my belly and chest when he is surrounded by medical personnel doing things to him. They are as caring as they can be and my appreciation for their work is boundless. I know that his little body has to undergo these things but I want to keep his spirit protected and bathed in love throughout it all.

I know Samuel needs the connection too – not always from me but I am the most obvious source. Two weeks ago, he was still swimming in my belly soothed by the sounds of my heartbeat and voice. I have my own ways of touching him that seem to comfort him. Yesterday, I sat with my hand resting a certain way on his chest and his pressures eased. I removed my hand and those numbers popped back up. So I sat there with my hand like that for over an hour until I went home to help put my big boys to bed. Before I left, his nurse, Marie, asked me to show her what I’d been doing that relaxed him. She promised to love him up for me through the night.

I didn’t tell Marie that this touch also involves my own little repetitive conversations with God. Samuel is surrounded by prayers from friends, family, clients, colleagues, neighbours and from people who I don’t even know. I am so touched and grateful. My mama prayers are so simple but they can come only from me.

It is Monday night now and he is still struggling. He is back on nitric oxide to open up his blood vessels so his heart doesn’t have to work so hard. He is on his usual array of blood pressure and heart medications, antibiotics, pain medications, and now a sedative as well. In amongst all of that technology is a picture of his brothers, a note and a drawing from Zachary, a couple of homemade Valentine’s Day cards and his blankets from Nana.

The heavy sedation means that my sweet, perfect baby lays there completely still and limp. I look forward to him feeling better and being able to press his feet against my hand and squeeze my finger and wrinkle up his face to remind me that he is in there. I believe that he can feel me there even though he is sick and sedated so he can’t respond right now. I sit with my hand on his head, tuck his tiny fingers around my finger and hold his hand. I pray for my breath, heart, blood, love - his for the taking when he was in my womb - to reach him now.

Saturday, February 12, 2011

The big move

On Friday, February 11, 2011, Samuel was moved from the NICU at Foothills Hospital to the PICU at Alberta Children's Hospital. This process took about 5 hours even though the two hospitals are less than 5 minutes apart. He was accompanied on transport by two nurses, a respiratory therapist, and one of his many neonatologists, Dr. Anne Tierney, who is also the medical director. At the end, three people wearing big EMS jackets and fluorescent vests arrived to take Samuel. I prayed that they would not break him. 

It was 3:20 p.m. when I hugged Dr. Anne good-bye at the PICU; Samuel was ten days old to the minute! Then came the new nurses, doctors, residents, respiratory therapists, sounds, smells, rules, and a whole new round of ventilator tweakings, blood gas tests and procedures. I attached a few photos of our experience as everything about it still feels mostly like a really stressful blur to me.

Samuel did exceptionally well throughout all of this. Clearly, he has more strength and courage than his mother at moments like these. He is settling well into his new private room at Children's Hospital. I am spending the day there today and have been promised a nice long cuddle with my boy. I hope to get a chance to speak with the surgeon, cardiologist and anesthesiologist who will, together, make the decision about when our boy goes to surgery to get his insides straightened out.


Hanging out waiting to move - an extra IV was put into his head in case the umbilical line was dislodged during transport. The yellow disk it to protect his sensitive hearing from the new sounds of the outside world.
The neonatal transfer stretcher and some of the transport team.

That's our wee Samuel in there.

Samuel's new digs at the Children's Hospital. Can you find our baby in there?!


His teddy bear from Nana and name blocks from brothers.

There he is, looking very relaxed. Add a tv remote in one hand and a beer in the other... oh, and maybe extubate him... but we're workin' on that.




Thursday, February 10, 2011

Moving on

A quick update tonight... Samuel is slated to move from the Neonatal ICU at Foothill's Hospital to the Paedeatric ICU at Alberta Children's Hospital tomorrow (Friday) morning. He had a good day on the conventional ventilator today with lots of tweaking to optimize his numbers. The doctors at both hospitals have discussed him at length and all agree that he is ready.

His nurse, Gemma, was extra lovely to us today. She spoke with us about what was happening and what to expect, taking extra time to soothe my anxiety. I do not fear going to Children's Hospital as I know it is a wonderful place with amazing doctors and I already have a trusting connection with Samuel's surgeon there. The move towards surgery is a gift and I am grateful.

But I do feel anxious about leaving the NICU at Foothills. When Dr. Carlos said today that he will no longer be our baby's doctor, I thought, What?! You mean you can't just stay with us *forever?* We have only been there for nine days - but an incredibly intense nine days. These are the people who saved our baby, tended to our baby, loved our baby, and sat by me as I cried about our baby. His little NICU cubicle represents a certain kind of safety and comfort and the people caring for him there seem like angels to me. I want that to follow Samuel where ever he goes.

Gemma also involved Chris and I in Samuel's care this afternoon. We watched her assess him and then got clean his little face and change his bum. These little things mean a lot to us, these acts that we would otherwise have done ourselves at home with our other boys helping and looking on. The staff have always included us in his care as intimately and respectfully as possible, but Samuel was fragile and we've mostly been able to just watch as others responded to his needs. Gemma showed us a kindness and an understanding for our experience as parents that won't be forgotten.


The loving hands of Samuel's Mum and Daddy.

Nurturing touch

Our wee love bug sleeping peacefully and growing strong.

If all goes as planned on Friday morning, our Samuel will spend the next couple of days settling into the PICU and letting the staff there get to know him. We will go to surgery when his doctors determine he is ready. We pray for their guidance and for Samuel's ongoing strength and courage.

Wednesday's Milestones

I got off to a slow start today; a cough in the night sparked an atypical anxiety response as I realized that I couldn't visit my baby at all if I was sick. I spent the morning resting and seeing if there were any other symptoms of a virus. After logging several hours of no cough and a couple of games of Wii with Jakey, I headed over to the hospital mid-afternoon.

Dr. Carlos met me in the hallway and urged me to hurry with scrubbing in as they were about to change Samuel to a conventional ventilator from the oscillator. We'd been told 2 to 3 more days of stability before they would try the switch but here it was happening right now! Two things were responsible for bumping up this step; Samuel was doing really well and there had been a fourth unsuccessful PICC line attempt that afternoon.

The PICC line is to replace the umbilical line that currently administers his nourishment and some of his medications. The umbilicus will wear out in the next few days and then he needs a central line to take over. Something about Samuel's rather confused anatomy is making it impossible to thread the PICC line close enough to his heart. The only option now is a surgically placed central line. We'd prefer to get the surgically placed line at the same time as the big surgery. Otherwise, they will have to do a surgical procedure bedside in the NICU and his recovery from that will delay the next steps.

The move to the conventional ventilator involved about eight people. Dr. Carlos was manually ventilating (bagging - just like on ER!) my baby while the Respiratory Technician, Roxanne, was unhooking the oscillator and hooking up the new ventilator and a crew of nurses were moving Samuel's soup of wires and tubes. I was standing out of the way and praying the only prayers I could think of. It took about 20 minutes before he was settled again to rest. Whew! A PICC line attempt and a switch to a new ventilator all in one afternoon - this for a baby who, just a few days ago, would desat to almost any touch or noise.

When they were done, Dr. Carlos instructed me to come over and kiss my baby. I planted about 15 kisses on his little warm belly and chest and arms. My brave, strong baby opened his eyes and then closed them sleepily.

But we weren't done. When they went to lower the top of the isolette, it broke. Samuel had to be moved to a whole new bed. This involved another half hour of drama and a slightly new configuration of nurses. And me. Roxanne looked at me and said, "would you like to hold your son for the first time?" Um... well... okay. It became like a high stakes game of Twister in his little NICU cubicle. I sat in a chair and he was placed in my arms. One nurse was bent over with her arm around me holding his handful of wires and tubes. Roxanne was bagging him and somehow the other nurses got one bed untangled and the new one into place and all the tubes pushed back through the right holes. Through the hub-bub I tried to stare into his face and feel his weight in my arms and drink in his smell. Then I reluctantly put my baby down on his new bedding and he got snuggled in to rest.

None of us touched Samuel or talked to him after that, wanting him to have minimal stimulation to recover from a way-too-busy afternoon. We stood around and watched his monitors. The CO2 number was alarmingly high and his blood pressure was up but stabilizing. All of his other numbers were great so it was just a matter of watching the CO2 to see if it would regulate and then getting another blood gas to see how he was faring.

As we were watching and whispering, I looked at Roxanne and said, "you were there, weren't you? You were in the room when he was born." She told me that she was there as part of the NICU team, yes, but she couldn't figure out how I could remember that when everyone was gowned and masked and there was so much going on. I said, "you spoke to me when the team left with my baby. You said, 'His name is Samuel? Then that is how he will be known to us as well.' It was so lovely for me." I told her that I remembered her eyes but really it was her warm, kind, reassuring voice that I could feel again now. That same voice had engineered Samuel's afternoon of interventions with such confidence and care. We both teared up.

Roxanne told me about the birth from her perspective - who was there, what kind of organization goes into making it all work. There were 18 people in the room - not including Chris and I - to deliver my baby. Normally, the NICU team is four people but they knew Samuel would need some extra help and so there were seven. The rest were for me; two doctors for delivery, a resident, the anesthesiologist, and nurses with various roles. I had extra nurses because it was shift change and both my day and evening nurses came with me.

They did a blood gas for Samuel and it came back iffy. They would repeat in an hour. Chris was there by this time so I went to get something to eat. When I deemed the Good Earth Cafe picked over and too spendy, I made a courageous trek to the hospital cafeteria in the basement. Aside from some bizarre connection I have to those little triangular egg salad sandwiches they always bring me after I have my babies, I share the widespread feelings of horror inspired by the the words "hospital food." And now I was actually choosing to *pay* for said hospital food.

When still admitted, I recommended they make their menus more honest by adding suffixes like "ish" and "esque" - for instance, "beef noodle soup-ish" and "mashed potato-esque." To suggest that they were offering true representations of beef noodle soup and mashed potatoes seemed really wrong to me. Then came the night where the menu included "S'bury Steak & M'hrm Gravy." I got the Salisbury Steak right away but it took me about ten minutes to translate the latter part into Mushroom Gravy. Just try saying that out loud - M'hrm. Gross. It's just not a polite sound to make while at dinner and throwing a fancy ampersands in front of it doesn't make that different.

I was just hungry enough to finish my "Beef Burrito-ish" supper, complete with congealed cheese and a sauce I have chosen not to think about, in the most depressing cafeteria I've ever known. Back upstairs, I scrubbed my scaly forearms yet again to enter the NICU. Chris and I waited until the next blood gas was done and returned. The numbers were not great but high enough to maintain a "wait and see" approach on Samuel's new ventilation. We said goodnight to our baby and his nurse Danielle - another of his lovely primary nurses like the famed Auntie Barb - and went home to put our big boys to bed.

Chris called again after the 11 p.m. blood gas and found the same news. Now we wait to see if he can stabilize on the conventional ventilator and transfer to Children's Hospital or if we will have a few more steps to take in between. Lots happening for our baby right now and so I am dancing my familiar dance with hope and fear. God be with our Samuel in his wide, deep circle of love.

Tuesday, February 8, 2011

A birthday present for mama

So today was Samuel's birthday and not mine. And really, presents for a one week birthday are a bit excessive. But he gave me a really amazing gift today.

They had just changed his diaper and taken his temperature. They put a little blanket over his face to block out light while they did this but there was no need to change his meds or oxygen as they used to have to do when they handled him. He tolerates noise and touch much better than he did even a couple of days ago. Afterwards, I removed the little blanket and found his face scrunched up into a full wail. He can't make any noise while intubated but this was his cry. I reached in and put my hand on his head, stroked his forehead, and whispered mama comfort to him. And he opened his eyes for me.

He opened his eyes! His expression relaxed and he was totally calm and he just looked right into my face. We gazed at each other through the isolette for 10 beautiful minutes.

I also got to change his diaper, something I should have already done dozens of times by now but have only done once. My mom, his nurse, the respiratory technician and I all delighted at the fact that he peed on himself as soon as I took off his diaper. He has already gained a reputation for this in his young life. He peed all over the place moments after he was born while a Neonatal team were trying to intubate him and get him breathing! Then he peed out the side of his diaper the other night after his nurse had just changed his sheets. (Changing his bedding is a not-so-small task given the number of tubes and paraphernalia one must work around!) So he has some of his internal organs a bit mixed up. In every other way, Samuel appears to be a perfectly normal boy! :)

Even after all of the hub-bub of being turned, assessed, suctioned and changed, Samuel remained stable. So we got to leave the top up on his isolette and I got to really see and touch him. I even kissed his amazing little soft belly. Dr. Carlos told us today that they expect him to be ready for a conventional ventilator if he can keep this up for another 2 to 3 days. A conventional vent puts us another step closer to surgery. (And it means that I can hold him for the first time - YAY!) Once he has 3 days stable on a conventional ventilator, they will consider it safe to transport him to the Children's Hospital.

The surgery would be a few days after that, once he has stabilized in the Pediatric ICU there. I know that will be a very hard day. Even with all the gains that it seems Samuel is making, he is still a sick baby and we've not been upgraded from a 50% survival rate for the surgery itself. More incentive to not look too far forward; I would hate to miss the love and delight of Samuel's life today.

Happy one week birthday, my sweet baby.

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