Homebound

In the hospital in Virginia yesterday my older sister did the unfortunate duty of telling my Dad, now that he’s feeling a little stronger, that he’s been diagnosed with terminal bone cancer. She said it was the saddest two hours of her life. She told me how my Dad had a hard time digesting it, as anyone would, because it’s not something anyone wants to hear, at any point in life. She also said that, although he was taking it hard, he talked to her only about happy things, simple things—spending time in Vermont, his dogs, his kids—and how this impulse to talk so openly about the things he loves in life and the things he is proud of, actually made the talk that much sadder.

And all this sad talk with my sister made me hang up the phone and think about sadness. I don’t think about it in a negative way. I think about it as something as necessary as oxygen, and how, without it, we might never really live. I’m not trying to be profound, just honest. Over the last 82 days I have felt different degrees of sadness, but because of those feelings, and how they inevitably make me more reflective, my experience of raising a son for the first two and half months of his life in a hospital has been richer.

David had a barium swallow yesterday to test his esophagus, and to try to identify the unexplainable thing the cardiologist found behind his heart. It came back normal. So they did another ultrasound to look again, and they found nothing. What they saw the other day was in fact just something fleeting, perhaps a little reflux at the time of the image, but nothing to fret over. The cardiologist used the best acronym for it yet. He said that what they found was just a little VOMIT (victim of medical imaging technology). I had hoped they would find what my friend Siri thought they might find: that David had an extra heart valve for love.

So with that potential hold-up all cleared, we’re headed home today with a healthy 6 and ½ pounder! It’s been 82 trying and tiring and hopeful days but he’s finally coming home. The way we think about it is that he’s coming home 11 days earlier than his original due date. If I had carried him to term, we would be ecstatic with joy to bring David home from the hospital today. However, our feelings are now more mixed than that. But not more mixed like more confused, more mixed like more full-flavored. When we walked out of the hospital last night to get one final good night sleep at home, Graham and I barely spoke. We both felt a strange nostalgia, like something was coming to an end, but that we should be happy it’s coming to an end and that we should have been skipping down the hallways. We are happy to bring David home, of course; we’re also nervous, as anyone would be. David will be hooked up to oxygen through the winter and perhaps longer, depending on how he continues to recover from his lung disease. We learned how to use all of our home equipment, and we have our own little monitor to bring home that beeps when his oxygen saturation drops too low. So we’ll now spend sleepless nights waking up to either a crying baby or a monitor that sounds like the worst alarm clock you could imagine, set on the loudest setting you could imagine, and we can’t turn it down, and we don’t want to turn it down; we need to hear it for obvious reasons—to make sure David keeps breathing.

Graham and I barely spoke as we walked out of the hospital last night because going to the ICN has become so much a part of our routine, and we realized suddenly that we’ve built a small attachment to it—to the community of people we now know there, and the daily interactions we’ve had. We’ll miss those interactions. It has also made us re-realize how lucky we are to have so much support, because our supporters have driven our positive attitude. Not everyone with a child in the ICN has that same support, and we’ve seen how much harder the whole preemie process can actually be, and we never wish it for anyone.

This is David during his first few days. This is scary to any new mother.

This is David now.

Around 6am yesterday morning I sat nursing David in a rocking chair next to his crib in the nursery and I thought to myself how far we’ve come. It has been these recent early morning feeds that I’ve come to look forward to the most, with the lights turned down low, the other babies all sleeping in their cribs and the night shift nurses, tired and ready for shift change, all off typing their shift notes quietly at their computers. I have found that this is the time when David feeds best, because he’s the most coordinated and calm and so am I. It’s so quiet. The first time I held David, back at the very end of October, on the tile side, where all the lights stay on and the monitors never stop beeping, the nurse told me that he would be able to feel my mood, whether I was calm or anxious, and he would respond to it, so it was best for me to try to stay calm. I couldn’t stay calm then. I was so scared because he felt so small and fragile and I always thought deep down that he was going to die. But I sat there yesterday morning and I held him close and I thought how far he’s come and how far I have come—to be so calm and content and cozy, to just be sitting there together, alone, with the curtains drawn around us and no need for any help.

I once told you that the support you’ve given us has come to us like steady and stable breaths on a ventilator. Without it we would never have been able to see this experience for what it has been: a chance to look a little closer at things, to look at things for what they are and to appreciate that.

With David coming home today, I have to say that this is the end of my blogging. David’s like a real newborn now, so from now on my blogging would just be about us and our son at our home, and that would be boring. I have included some final photos as a slideshow. They show David in all the stages he went through, from 26 weeks and 6 days to 38 weeks and 3 days old.

I don’t think David will remember any of this time, and all of the intensive and sometimes painful care he received. His body might remember it, and he may never wake up to an alarm on time (that will be his excuse as a teenager), but we will certainly remember it, and we want to remember it, for all that it was, the good and the bad, because it has certainly shaped us as a family, and although I wish we could have had a normal pregnancy, sometimes it takes a little sadness to really keep us awake.

Thank you, all. I’ll miss writing this blog. Graham and I are headed home to spend some snuggle time with our son. That’s what he, and we, need most.

This slideshow requires JavaScript.

J & G & D

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10 thoughts on “Homebound

  1. oh, jane. i love this blog so much. i cry every time (especially about your dad. so sorry.) you guys have been thru so much and i am so happy for your future at home with david. think of the parents you have become! amazing.
    xo,
    amy

  2. Jane/Graham/Baby David,
    Oh, I’ve been waiting for this post, the post to read the image was nothing to worry about, rather a fleeting moment.
    I also couldn’t wait to hear David was going home to his cozy, warm, quiet surrounding and nestle with Mom and Dad.
    His growth and development has been a miraculous journey and a sign of one tough little guy. Praise God for giving
    you and Graham the strength to remain strong and hopeful. Now, you can every minute and think of his arrival home as a new beginning.

    On a sadder note, I’m terribly sorry to hear of your Dad’s recent diagnosis. It just seems impossible.
    Please know you and your family are in our thoughts “daily”….

    In closing, please know we loved reading your posts. We look
    forward to our first meeting sometime soon.
    Love to you all, special hugs for David!
    Diane/Peter

  3. Happy Homecoming to all!! What a splendid day!! Little Davd, I am so happy you are home in your own crib in your own room with Mom and Dad to love and take care of you, just as they have since your arrival. So many prayers have been offered up for you, your Mom and Dad and now we can all celebrate (from a distance and via this wonderful blog) the result we have all been waiting for. Job well done by all!!
    Jane, I read and re-read this blog with tears streaming and tissues in hand. With the end of the blog, those of us that have been blessed to follow this journey with all of you, now have to say goodbye to getting updates. Jane, thanks so much for including us. Your enegy is now needed elsewhere.
    Jane, Graham and David, as for your family in Staunton, I want you to know that we are here for them 24/7!!! What every the need is , we will do all we can for them and we look forward to your first visit to the valley with David.
    May God hold all of you in the palm of his hand always!!

    Again, thanks for sharing,
    Love Connie and Tom

    P.S. I am sure GG will keep us up on the latest and will share all the pictures of your special bundle.

  4. Jane:
    Once again, you made my day! I am sooooo absolutely thrilled that David is able to go home and you and Graham can start the somewhat normal life of “first time parents”……if that can actually be normal to anyone the first time.
    I hope to meet your little guy sometime, and actually you as well, although I feel like I know you already on some level. Through your gifted writing, your blog has been inspirational, uplifting, worrisome (to put it mildly), and joyous. I loved being in on it.

    All good wishes as you move ahead.

    Sincerely, Claudia VanWagner (Rachael Mascolino’s mother and veteran OB Nurse.)

  5. Crying now as I have throughout- as you say, sadness is the cousin of joy. How absolutely wonderful for you and Graham…we knew from the outset that David would be nestled in on Goodrich Four Corners before this winter came to an end. And so it is. Thinking of your dad and you, Jane. And we can’t wait to hold your little man. xo, Eamonn & Marisa

  6. Welcome Home, David!
    Thank you so much Jane for letting us share in these first weeks of your lives together in the hospital. It has been a most special gift and we are so appreciative.
    Continue to take good care of each other – we will continue to think of you, and of your Dad as well.
    Love to you all,
    Sue & Mike

  7. Hey…..Jane & Graham……

    We left a reply earlier and even saw it on the ‘new comments’……now its gone………did you get it ??……Shall I repeat it ?

    We send tons of love……….

    Karen & Murray

  8. Dearest Jane, Graham & David……

    Since our earlier post seems to have vanished, we want you to know that :

    Jane……. we lament your father’s illness, and ache that he will never play ball with David….even as we rejoice over David’s determination to stay with you & Graham……We wish your family peace as it faces yet another trial and transition…

    Little Man Webster…..Good Job !!!!

    Graham…..We admire you so very much and can’t imagine a better Dad for David…….We hope the road will continue to be smooth ( without any need of ‘dozers ! )……..Look forward to a visit & a beer………

    Jane……While we are glad there is no further need of the blog, we will miss it, as you are a fabulous writer !…..There is surely a book in you and we can’t wait to read it !…..

    Graham & Jane……..Love that baby….Love each other….know that you are loved by many…..call if you need fish.

    Love…..

    Murray & Karen

  9. J, G & D,
    Congrats on bringing baby David home! What a little belssing and bundle of joy. Enjoy every second being cozy with the little man all snug in your home this winter. And thoughts and prayers to you, your dad and your whole family! Hang in there! And I will miss your blog too!!!
    XO Ches & Dan

  10. Jane, Graham & David…I hope this post finds you fairly sleepless and enjoying the kind of nights/days that most folks get to experience when they bring a ‘newborn’ home…and I hope you’re enjoying the bulk of it (I won’t say ‘every minute’ because those comments used to make my head spin around!)
    I’m very sorry to hear of your dad’s diagnosis Jane and will hope that another miracle descends upon your family.

    I’m sure David is wondering where his fan club is, now that he doesn’t have a pack of nurses waiting to respond to his every need, but I’m sure he’ll figure it out quickly that the most important folks in his life are right next to him.

    Hugs and health to you all!
    Barclay

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