24 Hours From Hell

I woke up this morning and saw my husband’s Facebook status: “Don loves Two Steps Forward, but wants to punch One Step Back in the throat.” I couldn’t echo that sentiment more.

It’s been a rough 24 hours in Nyanaland. I made it to her bedside in time for rounds yesterday, and the doctors were still concerned about the condition of her lungs and the blood gas levels she’s maintaining. The decision was made to change her ventilation from the conventional ventilator to an oscillating ventilator. The oscillator, I was told, is a less-damaging method of feeding the lungs oxygen, as instead of forcing the lung open and closed, open and closed, it forces the lungs open and holds them there, and then uses vibration to absorb the oxygen into them.

The machine looked like something you’d find in a Dharma station, and I’m not entirely convinced that everyone on the unit was sure of how to use it. But the respiratory therapists connected her and turned it on, and within minutes my three-pound baby was vibrating, quite unhappily, in her solarium. As you can imagine, a tube down one’s throat, vibrating continuously, is not a pleasant experience. As I said my goodbyes to her for the afternoon, I was warned that sedation was likely. I asked them to please contact me at home prior to feeding her narcotics and with a heavy heart, headed home to pretend to have a productive afternoon.

When Don and I made our way back later in the evening, I was dismayed to see her in her solarium. Despite my earlier request to be informed prior to drugging her, there she was, passed out on her stomach in a morphine-induced coma. Her evening nurse told us that she was borderline, and barely holding on. Her oxygen requirements were at 100% and she was satting in the 80s, but her CO2 levels had improved with the oscillator, and the RTs were happy with what they were seeing.

I, on the other hand, was heartbroken. Nothing about the oscillator looked like it was doing what it was supposed to be doing. For the past three weeks we’ve been watching her O2 requirements in the 70s, and wishing them down towards 40 percent. Her saturation levels should be in the mid-90s.

And then the nurse slapped a “look, but don’t touch” sticker on our baby. We’d just spent 45 minutes on two buses in the pouring rain, and you’re telling us I can’t even stroke her head? Can’t even talk to her? No parent should ever have to deal with that. Deflated, Don and I abandoned our plans to decorate her stall and solarium for Hallowe’en, had a quick visit, and sombrely, silently, made our way home.

We learned early this morning what it feels like as a parent to hear the phone ring you awake from a deep sleep. It was just before the 7am shift change when the resident doctor called. Nyana had struggled through the night, so they’d changed their mind on the oscillator and put her back on the conventional vent. The phone call was more of a courtesy to me—I suppose word had gotten out that I was most displeased about medicating my baby without informing me—and and the doctor wanted to make sure I was aware that Nyana had been given a paralytic on top of morphine this morning, to ensure she didn’t pull the breathing tube out.

I was so relieved to walk into the NICU this morning and see my babygirl the way she should be—calm and peaceful on her back, without the oscillator from hell jiggling her tiny body about. All her stats look a bit higher than I’d like to see them, but still within normal range for her. I caught the eye of the doctor after morning rounds were over and she pulled me aside. I was happy to get some face time with the doc; I didn’t know she was about to burst every bubble we’ve been holding on to.

She showed me two x-rays of Nyana’s lungs; one taken the day she was born, the other immediately after being put on the oscillator yesterday. Until now, I had been under the impression that she’d been born with terrible lungs and we were working to strengthen them. Apparently, the lungs she was born with were great—if only a bit premature—and they’ve been deteriorating over time. I’ve been told that they’re currently at the worst they’ll likely get, and we’re just trying to avoid damaging them further now as they strengthen and grow. This was tough to hear, but wait, there’s more.

Nyana will not be home for Christmas. It was all I could do not to break down and cry when she told me we’d be spending our first Christmas as a family in the NICU. I’m welling up just thinking about it as I type. Don and I have been holding on to this side of “her due date, plus or minus two weeks” since the day she was born. To think that we’re looking at mid- to late-January, well, there’s no poetic way to phrase it. It just plain sucks. Then the doctor confirmed what I guess I already knew: she’ll most likely be discharged on home oxygen. And then she threw me something that hadn’t even been on my radar at all. Because of the lengthy intubation, Nyana will likely have an oral aversion, and teaching her to feed will be difficult. Trying to feed her orally will only cause more negative associations with the mouth, so we’ll probably be looking at a G-tube—a feeding tube inserted surgically through the abdomen—for the first few months while we recondition her to believe that not everything going into the mouth is a painful and bad thing.

I think I’m in a state of shock. Perhaps this is my “ignorance is bliss” attitude finally catching up with me, or maybe this is just our first real “one step back”. I need to remind myself that in the grand scheme of things, she’s not as sick as other babies on the unit. It’s only her lungs, and not her heart or her brain or her guts. We’re looking at a setback that will heal over time, and there will be no outwardly visible repercussions by the time she’s playing in the schoolyard with her peers.

So we wait. Wait for her to grow, wait for her to get stronger, wait for a miracle. As my Facebook status says this morning, “Karen is not an overly religious person, but Nyana could sure use some prayers for healthy lungs from those of you who are.”

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About Mrs. B

Wife, mother, marketer--not always in that order. Lover of fine food, good company, and exceptional grammar. Mother of one former micro-preemie and one full-term monster baby. Building childhood memories in Vancouver's suburbs.
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11 Responses to 24 Hours From Hell

  1. Linda says:

    As I read this journal tears began to stream down my face and I realized that I was not crying for Nyana but rather for Karen and Don. Nyana is oblivious to all of the pain and heartache her Mummy and Daddy are going through, Nyanan doesn’t understand all of the ramifications that her weak lungs are presenting, Nyana doesn’t understand Christmas. What possible words can I give to Mum and Dad ~ there are none that could erase the sadness and despair they are going through. All I can say is that I am with you both in spirit and I will say a silent prayer for all of you. You are all so brave. I love you Karen, Don and Nyana. Love, Mum/Grannie

  2. Shannon says:

    Sending all my best thoughts and prayers to all three of you that your next two steps forward are huge and come soon.

  3. Alexis Sykut says:

    Definite prayers for Nyana and your family to have the strength through these hard times. Many hugs. And thanks for sharing with us all!

  4. Lynn Duncan says:

    I’m also not an overly religious person, but I’m sending prayers and good wishes Nyana’s way, with plenty to wash over the whole family.

    So hard to think.. in a year this will be a memory.. and that WHEN Nyana does come home, it WILL be Christmas.

    But it certainly is no fun hearing all this and feeling bubbles burst..

  5. Tasha says:

    Sending positive thoughts your way…fingers crossed, best wishes, and anything and everything else. Nyana and the both of you have been through so much that it’s devastating to read about the set back (worse for you, I know). Here’s hoping the next 24 hours are a million times better. And Nyana is going to prove all those doctors wrong…she’s a fighter and isn’t going to abide by anyone else’s timeline.

  6. Jennifer Littlechild says:

    Karen,

    It’s Jenni…Guy Littlechild’s other half here. Guy told me today that he has been in touch with you and that you had a baby. After a little bit of facebook stalking I found your blog…so here I am. Never met you before but Guy has said wonderful things!! We both wish you, your husband and Nyana many warm and healthy thoughts. She is beautiful!

    Jenni

    • Anne Brackett says:

      I read the messages every morning and what I read this morning was done with a very heavy heart. We have a Prayer Circle at Church and I asked for prayers when she was born. I have again filled out another card and asked she be kept on until further notice from me. Don and Karen keep strong . Love to all Mom and grandma.

  7. Kaili says:

    Wow. That really is just heartbreaking news. Poor baby- I’m so sad for all her tiny little self is going through. And for the stress this must be putting on you guys. I honestly think that first week that my babies were in the hospital were much harder than every day since they have been home. Try not to get too stuck on dates as so much really can change so fast. They are probably going to prepare you for worst case scenario, so hopefully she’ll go and prove them wrong. Good luck to all of you- hopefully today will be a better day.

  8. Mrs. B says:

    Thanks everyone for the comments today. Just knowing all of you are thinking of her (and us) means more than you can know.

  9. Max's Mum says:

    Hi there. I followed the link to your blog from your birth announcement post on the babycenter.ca boards. I was actually peaking in from the September birth club. I just really felt compelled to leave you a message here.

    My Septebmer baby ended up arriving in June at 26 weeks gestation – I know all too well the battle you’re forging through. He was born at 1lb 11oz and weighed in today at 8lbs 1oz. My little guy, Max, is 7 weeks corrected tomorrow and we’re still in the NICU with him. I feel your frustration with the familiar “2 steps forward, 1 step back” theme in the NICU. I’m saddened that the doctors felt they needed to dump all of the possibilities for your little girl’s future in your lap. I know doctors like to try to prepare you for the worst, but I’ve found they’re not very good at letting you know that’s not the way it will necessarily turn out.

    We were told that Max was a likely candidate for home oxygen – he decided they were wrong. Max was intubated for the first 8 weeks of his life (and again for a few weeks recently following surgery complications) and he comes with the oral aversion that goes along with that – sensitive to things in his mouth, an overly sensitive gag reflex, difficulty swallowing. But slowly, with small amounts of positive reinforcement, he began eating small amounts by bottle, he learned to not be scared to swallow, and he eventually loved taking his bottle (although he tires at about 1/3 of his feed). We’re back to square one since his recent brush with the tubes – but we’re confident we’ll get back there. He’s starting to take a soother again.

    My point is – try to take everything you hear in the NICU with a grain of salt. We’ve learned from our 21 weeks there that the doctors are doing a lot of very educated guessing on a lot of things. Your little girl will decide what she’s capable of. She won’t let anyone decide for her, so don’t let the “this could happen” from the doctors let you down.

    Feel free to email me if you want to talk to someone who’s been there. I can send you Max’s blog too if you’re interested. 🙂

    Take care.

  10. Olivia says:

    Well that broke my heart a little……it’s terrible that she won’t be home for Christmas 😦

    But maybe they could be wrong…..and she could pull a miraculous recovery out of her hat, you never know.

    I too am not a religious person, but you guys are in my thoughts.

    – Olivia

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