Wednesday, July 6, 2011

FIVE MONTHS OLD

Sam has been home for a week and life is settling in a little more. (Just a little.) I feel a bit like I have a five day old baby and not a five month old baby. My hormones and my heart had to get used to the fact that I had just given birth but that I had no baby to hold and feed and get up with at night. It became our "normal" that there was this hospital world and this other world, that we had a child we loved and who didn't live with us. The other day I had a truly surreal moment of walking into my bedroom and seeing him sleeping in his bed and thinking, "Oh my Heavens! There's a BABY in here! Where did that baby come from?! Oh yea, right."

Samuel's latest tricks include reaching for and grasping objects, kicking and rolling from front to back, and eating his nasal prongs. He is finding his own patterns of eating and playing and sleeping after a hospital life of schedules. And he has ... wait for it ... fat creases developing in his wee thighs. Yay!

Best of all, Sam is starting to "talk." After being intubated for more than two months and almost needing a tracheostomy (which would have meant he couldn't vocalize at all), I do not take his voice for granted. It took a while for him to learn to use those vocal cords after extubation, then he had a cry or silence but not much else. In the past couple of weeks, he started to babble. Yesterday, we laid on the couch and had a conversation, him cooing and chattering and me responding with interested and appreciative utterances. It was so very beautiful.

Samuel and I spend a fair bit of face to face time. I know the spot where he can focus his eyes on me and I talk to him and he responds with excited kicks and smiles that light up his whole face. With the right tone of voice, just about anything I say will elicit a joyful response in this boy. I begin with obvious statements such as "You are so lovely! Yes you are!" and then move into using a similarly excited tone to say things like "Could we change your NG? Yes? Would you like a new tube up your nose?" He grins big for this. Apparently, his verbal comprehension skills are not so good. 

"Yes, that is my NG taped to my face but not actually IN my nose. Milk is spilling all over the bed. My parents must now change my tube at 11:00 at night. Mwa-ha-ha. I am a crafty little bugger."

Thanks to my genetically inherited need (thanks Dad) to make up ridiculous nicknames, Samuel should be soundly confused about his actual name. (I remember the doctor asking me at Daniel's nine-month check up if he responded to his name. I was like, um, let me try that out and get back to you.) In addition to being called by the names of his three brothers, Samuel also is referred to as Schmoobie Noobie McBoobie, Burparelli Samsam, Stinkasaurus Rex, Mister Sam Man McMuncher, and little chicken pot pie. Others are emerging daily but I think I have embarrassed myself enough here.

His brothers are a bit conflicted about this whole Samuel at home thing. One morning I called out to see if anyone wanted to learn how to feed Samuel and all three of them dropped what they were doing and came running like cheetahs. They love to hold him, feed him, play with him. At the same time, they are clearly none-too-impressed with the amount of attention Samuel garners. It is hard for them to understand that this is what it was like when they were babies too and that it won't always be this way. Despite our efforts, particularly those of their most amazing fun Daddy, the boys are learning to wait and to entertain themselves a little more.


Zachary cuddling Sam.

Jakey hanging with Samuel. (I know. It does look like Samuel is praying....)

Daniel feeding Sam, which is tricky as one must simultaneously manage Sam's efforts to hold the bottle and his tendency to put his fingers in his mouth.

The boys are also having to accept that some of their summer is a little different this year. Going places with Samuel is still rather challenging because of the combination of bottle feeding and NG feeding via gravity feeder. And Samuel being on oxygen means that some things are just out - like camping. Even if I thought I could handle an overnight or two out in the tent with this wee baby and his various supports, being on oxygen means that he can't be within ten feet of any open flame. Hanging around the campfire will have to wait.

But I don't think it will have to wait too long. Yesterday, the respiratory therapist and nurse from Home Care came out to assess Samuel. We reviewed his history - that his defect was visible at thirteen weeks gestation before lung development has begun, that he had stomach, bowel, spleen and liver up, that I had severe polyhydramnios, that he was in ICU for three months and had three bouts of pneumonia, a blood sepsis and a blood clot, that he was on oscillation ventilation, nitric oxide, eleven different IV infusions and that we spent weeks expecting him to not stick around.

Then we noted that his heart is perfect and that is pulmonary hypertension is self-resolving. I took out his medications for them - three little bottles, an iron supplement, an antacid, a diuretic. Listening to his lungs, the nurse remarked that his air intake sounded perfect on *both* sides. She said, "he did indeed grow a second lung and that is nothing but a miracle." Indeed.

I am currently teaching the same university course that I taught last year. Back then, I was newly pregnant and had to leave class a few times to be ill. This year, I am engaging with my students while our Samuel is home being cared for by his Daddy (with a little help from Nana, Boppa, and our lovely Aynsley). We are busy and exhausted and figuring out how to care for him in addition to our other boys. We are learning what to freak about and not. But life is beautiful.

Dad's Rising Star employs his new talent - pulling his nasal prongs down into his mouth. Ew.

Happy birthday, Chris. Sorry I didn't get you a card but I birthed you four boys. What else do you want?!
Happy Sam.

9 comments:

  1. There is some really good tape that the pharmacy carries called Nexcare here in the US. Maybe up there too???? It's a regular first aid tape but it's extra sticky and can be torn into little pieces that you can tape right next to their nose where it creases in... And the NG WON'T get pulled out by grabby hands! Mommy tested for 7 months! ;)
    Love following your story! You are such an eloquent writer!!! You should think of writing a book about his story....

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  2. Yay Samuel (aka shnoobie noobie)! Yay to the rest of you all! Good grief, Jakey looks to be 9 years old in that photo with Samuel :)

    It is wonderful to see the miracles that do happen around us, and Samuel is one of them.

    Lisa

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  3. Family Life is a bowl of . . . hhmmmm . . . for this family it must be a bowl of LOVE, HUGS, PATIENCE, BEAUTY, and miracles. It sounds like things are getting into a routine of give and take and learnings. Corinne . . . I do have to second the comment of writing a book. Your written words are thoughtful, tearful, humorous, inspiring, true and a story of a journey about a life. thank you for letting so many into your life and the lives of your children and husband. Samuel and his journey has inspired many .... thank you....... love UJ & Michael

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  4. Omigosh! How wonderful for all of you that Sam is now at home.... what a wonderful rendition of all the love, patience, worry, fear... thank you, thank you so much for sharing your story with us. I can't wait to get the book. May God continue to bless you all in the days ahead. Our thoughts and prayers are with you.. Tony & Mary, etc...

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  5. CHRIS or Aus
    HAPPY BIRTHDAY
    It's unfortunate that your haberdasher has to
    work overtime enlarging your shirts. What a
    truly magnificent group.

    LOVE

    Uncle OF

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  6. "Could we change your NG? Yes? Would you like a new tube up your nose?" He grins big for this. Apparently, his verbal comprehension skills are not so good."

    Your sense of humor is ever a delight!! ;-)
    kirsten

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  7. You are teaching while being a Mom to a wonder baby - geez! You are so good at balancing a million things!

    Grew a second lung, has hearing in both ears (one more than the other), his body organs are functioning well, and the list grows and grows each post. Miracle baby would be my nickname for Samuel!

    Love - totally adore - the pictures. Happy Birthday Chris!

    It is so so heartwarming to see that Samuel is now fully part of the family. Gosh, you waited a very long time for this week to happen.

    Big smiles and sending you lots of wonderful joyful energy,
    Dawn

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  8. I'm glad you and your family are doing well. Stay strong and God bless.

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  9. those last two pics, in particular, are so wonderful!! & i also note that jakey looks so big next to his little brother, wow! so glad to hear all is falling into place for you all. :-)

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