Updates on Nolan

What’s another surgery, in the grander scheme of life? That seems to be Nolan’s thinking, or dreaming in this case. He’s moved on already, and judging from this pose he held for a while tonight while sleeping, he’s planning for the future. What, exactly? Perhaps his first Superman costume? Leading a rally on the Mall in DC? Shaking his fist at The Man? Letting Sambuka lick his hand? We’ll never know what he was dreaming about, but it was darn cute.

There was some indecision this afternoon about whether to leave Nolan on the ventilator overnight, but he decided to end the discussion by extubating himself. I’m sure that was a bit of a crisis in the moment it happened, but he seemed to be doing pretty well off the ventilator and on the nasal canula this evening when I was there (though he’s not quite back at his pre-surgery respiratory state). He was in a bit of pain this afternoon and seemed to be waking up distressed periodically this evening, but that seems like a normal reaction to surgery to me (that’s a certified non-medical opinion, there). He’s on some pain meds, but they don’t have him totally socked out.

At this point, I gather they wait for him to have a bowel movement and then will begin feeding him again. I guess you don’t call it oral feeding if it’s via the new gastrostomy tube (which comes out of his stomach), but it’s not i.v. nutrition, either. Anyhow, Kara and I supposed that they would slowly build him up to his former level of feeds, but the process and timing of that is not clear… like so many things in the NICU. We’ll know when it happens, if not sooner.

So that’s the scoop. Thanks for safeguarding Nolan through surgery with your love, prayers, thoughts, and support. The last message, from Sar, took us over the six hundred comment mark! Wow, what an amazing community of friends Nolan has.  Ya’ll are totally fab!
-Maria

so Nolan’s 3 pm surgery got bumped up to 8:30 am this morning, so with hurried dash, neighbor’s and mimi’s (grandma carolyn) doggie daycare and may may’s (auntie maria) floor construction consultation +(lots going on at 137 windsor circle), kara and i were at the hospital in time to spend a little time with him before his surgery.  He pretty much slept the whole time.  now he is back in the nicu having done well with surgery and still in the throes of anasthetic sleep. he did have some blood transfused, but all has been a good report so far. reattached bowels, g-tube and all.  we will keep everyone posted.  namaste.

the surgery is scheduled for 3pm (just letting you know so no one is worried that there’s no news until late afternoon). we’ll update as soon as we can after he’s out of surgery. -maria

please keep nolan, kara, and me in your thoughts tomorrow.  pray the surgeons are on their game and the anastethics(?) do what they need to do and no more.  please send vibes of strength, patience, hope and love our way, just like so many of you have been doing for the last four months plus.  peace.

So many cute pictures — where to start?

Nolan is fighting sleep these days.  He spends a long time in that twilight phase where he seems on the edge of a coma, then pops awake and interacts for a few minutes before drooping back towards zzzz-ville for a few minutes before….  you get the picture.  So here he is, fighting the full closure of the eyes. 

He’s also getting better and better at holding on to his pacifier by sucking.  The other day, I saw him make an impressive save: the pacifier was about to fall out of his mouth, with the handle side about to win the battle of gravity with the little bit that was still in his mouth, but he made a sudden slurp and the pacifier popped right back into place!  So, good progress on the sucking strength front.

He’s loving his mobile, and he has very active hands, especially when he’s watching the mobile.  He’s working on grabbing things, albeit at a very clumsy stage. 

He’s developed a bit of a preference for looking left, so they’re working on keeping interesting things to his right so he’ll start to overcome that preference.  I think this is a pretty common occurrence with babies in nurseries, where they spend a lot of time facing the same direction in a crib.  I think it’s also pretty easy to overcome with a focused effort.

Nolan’s hearing test was great, and his latest eye exam showed the eyes improving (blood vessels regressing).

And just to lighten up your day, I wanted to share a picture of the clown who I caught impersonating Ronan last weekend.  What’s the consensus out there about earliest clown memories: good or bad? 

If you click through to the bigger picture, you can see the mobile which Nolan likes so much.  It gets in the way of pictures, except when it makes the picture…

More pictures in the photo gallery.  Enjoy!

-Maria

Nolan is sweetly sleeping at the moment, apparently he was very alert this morning and tuckered out right after nursing with Kara.  He is around 5 #, 5 oz after a couple of days of weight gain and fluid loss.  He is back on diuretics because he was retaining some fluid which started to hamper his breathing.  The diuretics are really working and Nolan is peeing up a storm.  All in all things are going well.  Next Tuesday Nolan is scheduled for surgery to reattach his intestines which were disconnected way back in ancient history to remedy his NEC (look back through the posts for info on this).  Also on the schedule is putting in a g-tube or mickey button.  The g-tube is an opening in the stomach wall and the skin outside and is for giving Nolan fortified milk directly into his stomach to insure his continued growth.  He has had some issues with swallowing and isnt too fond of the taste of fortified milk from the bottle, so the doctors are advising the g-tube as a simple solution.  Kara and I are still deciding whether or not to go with this, we are hoping Nolan will take to bottle feeding like he has to breast feeding, but the docs think he will not organize all the sucking and swallowing in a week.  Unfortunately, Karas breast milk will not provide enough calories for him to keep growing at the rate he is going now.  He is getting around 90% (guesstimation) of his nutrition from his feeding tube and the fortified milk, which optimistically is being reduced to 24 calorie fortification today (which is one step closer to 20 calorie mommy provided breast milk and a step away from the g-tube).  So keep us in your thoughts especially next Tuesday and the following days and envision a speedy and healthy recovery for the Superbean.  We are.  

Nolan weighs in last night…(drumroll, please) at a little over 5 pounds!  we are very excited about so many things, there is talk of him coming home in the foreseeable future, possibly mid february, if everything stays the current course.  There is a lot to happen before then but I just wanted to get the news out.  and to answer Peters question, yes he is over a month past his original due date, which was december 6.  keep those positive vibes coming, they are definitely working.  thanks to maria for the last round of photos and for so very much more.

It’s true, Nolan had his four month birthday yesterday, and he looks great!  He weighed in at 2100 grams (4 lb, 10 oz) – that’s four times his birth weight! He’s sleeping in a crib and the copious medical machinery has largely been replaced by real baby toys like mobiles and mirrors. 

With the ventilator gone and Nolan more stable, it’s not a multi-person task to pick him up.  When he’s upset, Kara can pick him up and see if he wants to nurse.  He can usually be transferred to someone else without setting off alarms, so Ronan and Kara can both hold him in one visit.  This is a huge and welcome change from a month ago!

In other good news, Nolan has been moved to a new pod, where not only is there a window, but he is next to it.  That makes it a lot easier to take pictures to share.  In an attempt to remedy my commented-upon slackness, I’ve posted some more pictures in the gallery.  I have a number to sort through from the last month, so if saucy Caroline wants to help me get them uploaded, I stand a chance of making it through the backlog.

Now that Nolan is past the 2 kilo milestone, the docs have started talking about scheduling the surgery to close his stoma from the colonostomy that was performed when he was four weeks old.  Right now, they’re saying it will happen next week.

All in all, we can see pretty clear and miraculous progress happening, even as we consider the hurdles yet to be faced.  Yesterday, Ronan and I met the parents of a girl who was born on January 3rd, a few weeks younger than Nolan was at birth and weighing just a hair less than he did.  It was nice to be able to show them the progress Nolan has made from a similar place, and hope that it made a positive outcome feel more possible for them.  Please keep their baby in your thoughts and prayers.  It was just a few months ago that our family was struggling with many of the same problems, and your love and prayers made all the difference for us and Nolan.  It is truly a blessing to have such wonderful friends.

-Maria

Nolan has busted through the 4# mark, weighing in at 1850 grams last night at midnight.  He is feeding very well and spends long periods deep in sleep.  We are beside ourselves with happiness and pray that we have a steady progression towards taking the little critter home.  The docs have thrown that word, “home”, around a little bit which both elates us and scares us to death.  We have a lot to do to prepare 137 Windsor Circle for the arrival of Superbean, and Kara and Nolan’s Mimi have started the ball rolling with a crib, changing station, mobiles, clothes, etc.  He still has (at least) one more surgery, the reconnection of his intestines, which will require some recovery and healing.  We hope everyone is having a wonderful 2007 and again thanks for everything everyone has been doing to nudge Nolan along in health and happiness.

Nolan has amazed everyone in the past few days, he’s nursing well, breathing almost entirely on his own, gained (and lost and gained) weight and has been awake for periods of intense and thrilling alertness.  His Mimi and Dindin held him for the first time yesterday and were very excited.  He also got to spend some quality time with his Papaw and Uncle Doolittle this past weekend.  We all were very thankful that my brother Shannon was able to spend Christmas and the following week with his east coast family and give a shout out to his Auntie Amy who we wish could have joined us as well.  (But we know she enjoyed her week of junk food and movies.)  Other visitors from the west coast were former Chapel Hillians Lollie and Savannah, it was great to see them and have them back in the triangle for a few days.  Thanks so much to everyone keeping him and us in their daily thoughts through all the dark and bright days in 2006.  As we open the first day of the new year we want everyone to know how much we appreciate your support.  Please keep thinking growing thoughts and pray for continued good health and steps forward for the little critter.  We hope 2007 will be the year of the Bean.