It Sucks More Than Anything and It’s Amazing

So we’ve been in the hospital for a week with our newborn son. (Here’s an update on what’s going on with our family.)

This last week has been, for obvious reasons, the worst of my life. And it sounds as though even worse days are likely in store for us. But at the same time, these tragic days have also revealed to me the stunning beauty of community and the breathtaking goodness of the human soul.

In no particular order, here are the things that are making my life right now an absolute nightmare, and the things that are bringing me to my knees in gratitude.

 What sucks so badly that I can’t even think about or else I just sob uncontrollably:

  •  Not being able to see or care for Lydia. I miss her charming, goofy personality and I hate the fact that I can’t be her mom right now. I went from spending every moment of every day with her for the last 3 years to only getting visits on the weekend. I ache to be with her.
  • Felix can’t see our faces. For the next several months, he will only know his mama as the woman behind the mask.

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  • I can’t breastfeed. That was one of the first and worst things they told me upon admittance to the hospital: no more breast milk. I could pass along a pathogen. We have to feed him formula. I almost fainted when they told me. Breastfeeding is SO IMPORTANT to me. It kills me that I can’t share that intimacy with him, or all the health benefits of breast milk. (For now I am still pumping, with the hopes that maybe we can resume some day.)
  •  Lydia can’t even see her brother. She is forbidden from entering his room when she visits. She will not know him at all by the time he is discharged. By the time she can see him again he will be a whole different baby. And she looooooved being able to snuggle him.
  • This is not at all the infancy we had in mind for him. Obviously, no one plans for an infancy in the hospital; but we’re about the crunchiest, hippyest parents you can imagine, and this life is as far from that as possible. We started out breastfeeding on demand, bed-sharing, cloth-diapering/Ec-ing, babywearing, and doing lots of skin-to-skin. Now we’re formula-feeding and counting every ounce; he sleeps in a little steel white cage across the room; we’re using disposable diapers and weighing every ounce of poop/pee; and I can’t even go near him without putting on a gown, mask, and gloves. I won’t be able to touch his skin for months. We’re covering him in creams and oils with ingredients I wouldn’t dream of bringing home, squeezing sweetened/flavoured/dyed medicines in his mouth, and pumping his body with antibiotics. I worry that we’re destroying him as we try to save him.

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  • Having to hear him scream through all the awful tests. He’s constantly being poked and prodded – in one week he’s had a spinal tap, innumerable blood tests, several catheters, IV’s, two X-rays, ultrasounds, lung swabs . . . he can never catch a break. And I can’t do anything to help him. It’s agony.
  • We’re amongst so many suffering families. I can’t even bring myself to look into the other parents’ eyes or gaze too long at the tiny cancer patients in the halls. The baby next to us screams all day and all night. Just so much pain.
  • The fact that we won’t be home for Christmas. I won’t be baking Christmas cookies with Lydia or lighting the Advent candles every evening. We never even put up our tree. It kills me.
  • All my eco-consciousness has to be thrown out the window. We make more trash in half a day than we made in a week back home. Everything is disposable. I toss out 20 pairs of gloves and 20 masks a day, and send out 10 gowns to be washed every day. We’re using disposable diapers and wipes and chucking a dozen half-full bottles of formula with disposable nipples every day. Then there’s the disposable medicine tubes, breast pump sterilization packets, etc. I feel awful.

 

What’s so amazing I can’t help but sob with gratitude and awe:

  •  All of you people. Honestly, it’s breathtaking. The love and support that has been pouring in has me stupefied. From the monetary donations flooding in from friends, family, and complete strangers; to the prayers people are saying on our behalf; to the encouraging notes and emails I receive on a constant basis. It’s just too much. I know that my friends are organizing a big fundraiser to help us out financially and they’re pouring their precious time and energy into it. Then there are the volunteers at the Ronald McDonald House, preparing our meals and maintaining the beautiful house; and the wonderful nurses who go out of their way to make us comfortable. We are being so well taken care of. I am dumbfounded by the generosity and kindness. I cannot believe you would all go to such lengths to help us when we’ve never done anything for anybody.
  • That we caught the disease so early. One of the doctors here has been working in the field for 16 years and has overseen 11 SCID patients. In every other case, the disease was caught because the child was already sick (which typically happens at three or four months of age.) Felix was the first one caught via newborn screening, at two weeks, before he showed signs of being seriously sick. (Screening for this disease is very new, and only practiced in some states and provinces.) Hopefully catching it early will mean an earlier and easier recovery. I guess that’s sort of a miracle.
  •  That Lydia has two sets of wonderful grandparents, as well as aunts and uncles, to care for her while we’re dealing with this. I know that she is being well taken care of. I don’t have to worry at all. I just miss her.
  • The Ronald McDonald House across the street. For only $10 a day, we get comfortable lodgings and delicious home-cooked dinners every night. They’ve got play areas and TV’s and sitting rooms. It’s a lovely place full of lovely people. Such a blessing.
  • That we live in Canada, and all of Felix’s care and treatment (so far) comes at no cost to us. Unbelievable. The only real financial difficulty comes from our complete lack of income during this time, but our amazing community is helping take care of that through fundraising. Incredible.
  • So far, Felix isn’t really suffering. Like I said, the disease was caught before he showed any symptoms. As of now, he has a mild cough and bladder infection which are being closely monitored and treated, to keep them from escalating into something life-threatening. Otherwise, he’s a generally content baby, sleeping lots, showing little sign of discomfort aside from all the testing and probing.

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  • We can be with him. Sure, we have to be covered from head to toe to see him. But we can spend as much time in his room as we want, talk to him, and hold him. A lot of parents with critically ill children can’t do that.
  • His condition is treatable, possibly curable. If he has a successful bone marrow transplant, he will be cured and should be able to live a mostly normal life. If that doesn’t work there are other treatments available to keep him healthy, hopefully for a long and happy life.
  • I have an amazing partner to go through this with. He stays hopeful when I lose faith. He takes care of me when I lose my mind. He’s a loving father to this tiny, fragile baby. I couldn’t ask for better.

Update on Felix

Dearest friends,

I’m afraid this blog is going to be a little different for a while, as I will likely be using it mostly to provide updates for friends and family on little Felix. This is the best and easiest way I know to keep loved ones up to date on our baby’s condition. I hope to be as thorough as possible, both for those who love him and are concerned about his well-being, and so that those who are the praying type know what, specifically, to pray for.

As most of you know, last Monday (December 3), when Felix was only 12 days old, I got called from the newborn screening center at the Victoria Hospital in London, letting me know that Felix’s blood test got flagged for a rare, life-threatening disease called SCID — severe combined immune deficiency. We were called in to get him re-tested two days later, since false positives are very common. So we made the two-hour drive out to get him assessed and to have his blood taken. He appeared perfectly healthy, aside from some oral thrush, which is comon in babies, and a mild cough.

By the time we had arrived back home, we were called again — the initial results seemed to confirm the diagnosis. We were asked to return first thing next morning. We were warned that we might end up being admitted and have to stay the night.

So we left Lydia with grandparents and made the trip back out to London with a change of clothes and toothbrushes. As soon as we arrived, the bad news started rolling in. It hasn’t stopped.

We are now admitted here long-term. We have been here a week, which is just the start. We have been told that best-case scenario, we will be in hospital at least for the next three months, but very likely it will be much longer.

The diagnosis has been confirmed. The good news is that the disease is treatable, possibly curable.

As I’ve mentioned, this genetic disorder affects Felix’ immune system — he is unable to produce t-lymphocytes, which are necessary to fight infection. In other words, he has no immune system. Any bacteria or virus that he gets exposed to can be life-threatening. So far, he’s done quite well, though recently they’ve identified a bacterial infection in his bladder and an unidentified infection in his lungs. They are treating both with antibiotics until they can learn more.

Fortunately, he doesn’t seem to be suffering too much as a result of these infections besides the cough. The greatest source of suffering comes from the constant testing. He gets blood work every day, and has had numerous catheters, a spinal tap, a lung swab that required sedation, three x-rays, and an ultrasound. He is due for another ultrasound, more blood work, and a catheter dye test tomorrow.

Meanwhile, to prevent any exposure to pathogens, Felix is in strict isolation in a sterile environment. To see him, we must wear masks, gloves, and gowns. I undersand that this will be the case the entire time we are in hospital.

Felix’s absolute best bet for recovery is a bone marrow transplant. Ben, Lydia and I have gotten our blood taken to see if any of us is a match. If we are, and the transplant is successful, he will essentially be cured. If we are not, there are other treatments available, though they are expensive and life-long.

My two greatest prayer requests are these:

1. That none of his current infections spread or put him in serious danger until he can get treated; and that he doesn’t develop anything new.

2. That one of us is a match for a  transplant. Lydia is the most likely match, and the odds are only 25%; Ben and I are even less likely.

Thanks so much for all your love and support. It has meant more than you can know. I will try to keep you updated as I can.

Please Pray for Felix

OLYMPUS DIGITAL CAMERAHi friends,

I just wanted to offer a quick update as I will probably not be blogging much in the next little while.

Monday I got a phone call from the newborn screening center, letting me know that Felix’s blood test got flagged for a rare, life-threatening disease called SCID — severe combined immune deficiency. Basically, this disorder means that the baby’s blood doesn’t have the necessary elements to fight infection, and is fatal if left untreated. This morning we had to drive in to the hospital two hours away to get him re-tested.

We already got some initial results which don’t look good — they seem to confirm the diagnosis. We still have to wait a week to get a full diagnosis, but we have to return to the hospital tomorrow morning to get him screened for any infections. If any are detected, he will have to be treated and possibly stay overnight to be monitored. Again, this hospital is two hours away from our home, which will mean another long day.

It’s been a long, long couple of days and I don’t have any emotion left. I just wanted to update you, my dear readers, and ask for prayer.

A few hours ago, I would have asked that you pray that the tests came back negative; but since that possibility seems less likely now, please pray that he has a less severe, more treatable form of the disease, and that we’ll be able to take him home tomorrow night. It is likely that we will be spending a lot of time in hospitals for the next weeks, possibly months.

Thanks so much for your continued love and support.