Tuesday, March 29, 2011

Eight weeks old

Today our sweet Samuel is 8 weeks old. Chris and I are sitting in his room (yay for hospital wi-fi!) after a meeting with his doctors. This afternoon, the big brains from ICU, Surgery, Anesthesia (Acute Pain Services), Respirology and ENT (Ear, Nose and Throat) came together to make a plan for our Samuel.

The buzz over the last few days has been about whether Samuel might need a tracheostomy. This is an airway surgically placed in his trachea to provide long-term ventilation. Being intubated with the endo-tracheal tube means that he must remain at least somewhat sedated and have limited holding or movement so as not to irritate or compromise his airway. That's okay for the short-term but we are at eight weeks and not ready to extubate just yet.

The ideal would be for Samuel to be extubated and function on an external course of oxygenation. Failing that, the trach would allow him to be a more normal baby while still on ventilation; we can pick him up, dress him, cuddle and bounce him, and start moving towards bringing him home. We can get on with attachment and development and, with less sedation, his brain can start recovering from the haze of narcotics and benzodiazepines. As he grows, the trach may prove helpful in providing oxygenation to get Samuel through viruses and the like.

So there would be advantages but a tracheostomy is a huge step. He could have this alternate airway for a few months or a few years. A voice by-pass valve can be put in once he is older but, until then, we would still not get to hear our Samuel cry or speak. This means that he wouldn't be able to signal distress and would have to be visible to a trained, awake adult at all times. There would be major lifestyle and family adjustments and ongoing risks of his open airway.

The plan from today's meeting is that Samuel will have another couple of weeks to work on the sedation and ventilation issues and to have a trial of extubation. The specifics of this plan are being overseen by the Dr. Ferrin (who we have dubbed our Pain Guru) from APS and the intensivists from ICU. Having Dr. Ferrin on board has already shown us some progress - and we appreciated that he referred to Samuel as a "tough guy" for being able to handle all these drugs rather than noting that he's a regular junkie at this point. We will see what our little man can do with the newly planned changes. We know that the tracheostomy is an option we can deal with if it turns out to be what he needs.

The great news is that Samuel's digestive system is working well enough that he is up to full feeds via his NG tube. On Monday, they turned off the TPN and lipids infusions that have provided IV nutrition since birth. He gets to have a full belly and I get to change diapers with real baby poops. Any grief I have about not being able to breastfeed him is erased by these signs of progress. Somehow it seems normal and fabulous that he be able to get his nourishment through a tube in his nose. And without the nasty TPN in his system, Samuel finally has that amazing, intoxicating baby smell.

The move to oral medications and the end to IV nutrition has brought us from the massive IV tree down to a regular old single IV pole. The nurses stopped giving Chris test results since they realized he was obsessing about the numbers. So he started counting how many syringe pumps were in service instead. Last week there were nine pumps. Today there are three - his two med infusions plus an extra pump for when he gets his antibiotics. Small things delight us.

The blood clot continues to be monitored and the Hematologist who visited him today had no concerns. He is on antibiotics for several weeks and anti-coagulants for several months to treat the blood infection and clot. The weekly echocardiograms show that Samuel's heart is strong and getting stronger - just as my Grandma assured us last October. The cardiac pressures are lower than they anticipated they could be at a month post-surgery.

The last couple of days have been more hopeful than they were last week. I have had good talks with Samuel's doctors and many amazing nurses. I am especially grateful to Dr. Meagan who sat with me on one of the darker days last week and gave me the full benefit of her medical expertise along with her heart resonance as a mother of littles. Samuel's medical team offers me understanding of his process and validation for my experience as his mama. I am in awe of the brilliance and compassion that they bring to our baby but also to us as his family.

This is a difficult phase of recovery. The veil of expecting Samuel to die has been lifted and we are happy, relieved, and grateful beyond words. Those feelings are real but so is the pain of watching my baby struggle and the grief of each limitation. It is daunting to maintain my connection to my baby and our long days in the hospital and also my connection to the "outside world" where my family is fed and happy and my boys have school and field trips and soccer practice. I would love to have my four boys all together so I could feel overwhelmed by the task of meeting their needs in a more normal way. :) I know I need to find the balance as we have several months ahead of us before Samuel could be home and more big adjustments when that happens.

I want to say more about how the boys are doing and I keep encouraging Chris to let his experience be voiced here as well. For now, I am signing off for some rest and wine with my husband while our big boys spend the night with Nana and Boppa and our baby boy gets loved up by his wonderful nurse Joanne. 

Chris with Samuel's tidy IV pump pole - no Milrinone! no TPN or lipids! no Fentanyl! Go Samuel!

Aunty Cathryn came to visit and brought a Peters' burger and a gift.
Colin sent this sweet dog to watch over our babe.

Samuel all tucked in with his many (many!) cozy soft Nana blankets.

Yes, folks. That's what a baby on midazolam, methadone, morphine, ketamine and clonidine looks like. Sleep well, sweet prince.

10 comments:

  1. sounds like some tough choices are in works ... but of course . . . we are rooting for natural breathing ... wouldn't that be lovely . . . lovely like Samuel . . . Oh!! and lovely like Daniel, Zachary and Jacob . . . can "boys" be "lovely"? or are they "handsome"? anyway . . . . love and encouragement to all. hugs UJ and Michael

    ReplyDelete
  2. We will beef up the prayers for the next couple weeks....guidance, peace and progress for Sam.
    Carissa

    ReplyDelete
  3. Boys can definitely be "lovely"; no doubt about it! Especially Samuel and his Daddy and big brothers!

    Lovely also to hear the news about his IV tree being reduced to a single pole. That doesn't sound like such a small thing to me, yay Samuel!

    Even more lovely to hear you and Chris managed to find a night of rest and wine. With it becoming more clear that Samuel's journey won't be a short one, that is one of the many things I continue to pray and hope for you both, to find moments of rest and peace of your own along the way, to refresh and recharge as you need to.

    All our love and hugs,

    Cathryn, David, Cameron & Colin
    xo xo xo xo

    ReplyDelete
  4. Oops... meant to also say LOVE the photo of Colin's dog watching over Samuel. Colin is very glad "Laura" is able to keep watch over him!

    Also meant to post the link here for the Samuel's Light Smilebox photos we made for you to keep as part of his blog record. This Smilebox was inspired by the blog and all of the care Samuel is experiencing that you so beautifully describe in your entries.

    The link may not work within the blog itself, you may need to copy and paste to an open browser:

    http://smilebox.com/playEmail/4d6a4d334d7a49774f546b3d0d0a&sb=1

    I'm not sure if I remembered to tell you to turn your speakers up if you have them when I first sent it. The song I used is "Shepherd's Lullaby" from a parish CD recorded by our very own St. James's church choir a few years ago.

    Love,
    Cath

    ReplyDelete
  5. Corinne, I found this and thought of you and the very lovely Sam.

    Holland by Emily Perl Kingsly
    When you’re going to have a baby, it’s like planning a fabulous vacation
    trip - to Italy. You buy a bunch of guide books and make your
    wonderful plans. The Coliseum. The Michelangelo David. The
    gondolas in Venice. You may learn some handy phrases in Italian.
    It’s all very exciting.
    After months of eager anticipation, the day finally arrives. You pack your
    bags and off you go. Several hours later, the plane lands. The flight
    attendant comes in and says, “Welcome to Holland.”
    “Holland?!?” you say. “What do you mean Holland?? I signed up for
    Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to
    Italy.”
    But there’s been a change in the flight plan. They’ve landed in Holland
    and there you must stay.
    The important thing is that they haven’t taken you to a horrible,
    disgusting, filthy place, full of pestilence, famine and disease. It’s just
    a different place.
    So you must go out and buy new guide books. And you must learn
    a whole new language. And you will meet a whole new group of
    people you would never have met.
    It’s just a different place. It’s slower-paced than Italy, less flashy than
    Italy. But after you’ve been there for a while and you catch your
    breath, you look around.... and you begin to notice that Holland has
    windmills....and Holland has tulips. Holland even has Rembrandts.
    But everyone you know is busy coming and going from Italy...
    and they’re all bragging about what a wonderful time they had there.
    And for the rest of your life, you will say “Yes, that’s where I was
    supposed to go. That’s what I had planned.”
    And the pain of that will never entirely go away... because
    the loss of that dream is a very significant loss.
    But... if you spend your life mourning the fact that you didn’t get to
    Italy, you may never be free to enjoy the very special, the very lovely
    things... about Holland.

    Love Carissa

    ReplyDelete
  6. Hi Cath
    a most "lovely" tribute to the Austin Family , , , the picture collage and song are marvelous . . . bless you.........................UJ & Michael

    ReplyDelete
  7. love your comment about his yummy baby smell, & all the good news in this post. we're continuing to send our best!

    ReplyDelete
  8. Hi Corrine and family,

    My beautiful daughter Jennifer, the NICU RN at Foothills was here for dinner a couple of nights ago, and we looked at your blogs for Samuel - and from her place of knowledge and wisdom she said, "I believe Samuel will be just fine." This gave me comfort, and I hope it does for you too.

    Hugs from Susan and Jen

    ReplyDelete
  9. Hi Corinne,

    I am so grateful that you continue to update this blog and keep us all in the loop. Samuel's progress has been amazing, astounding, miraculous and heartwarming. You are inspirational in so many ways.

    On a completely unrelated note, as I'm typing this I can hear what appears to be the sound of machine gunfire outside my home. But upon closer inspection, it turns out to be a variety of woodpecker (just forgotten the breed) using the streetlamp outside to call out to prospective mates. Why am I telling you this? Just making conversation...

    ReplyDelete
  10. I remain glued to your blog and keeping you and your family in my nightly prayers, Corinne. Sometimes even sending beams of healing energy to everyone. I so care and want to keep in the know about this journey you and Chris are walking with Samuel.

    In deep care,
    Dawn

    ReplyDelete