Timmy Update: Ditching the Oxygen (again) and More Weight Watching

I find that if I start a mass of backblogging and don't blog current things, eventually backblogging is all I'm doing and it's much harder to get myself to do it because I have to try to remember things.  Not to mention I find it a much more effective way of keeping friends and family in the loop when I blog current events.

Monday, November 15th was a monumental day for us.  I had emailed Val Vickers the night before wondering if she knew the results of Timmy's most recent pulse oximeter study (taken over the last few days of October).  Bless her, she called me late that morning and asked if I was ready to lose the oxygen.  I was so certain that Timmy had failed this time.  (Ironically, I could have sworn he would have passed the first test with flying colors and he failed.  Surfed way too much while he was sleeping.)  But no!  Hooray!!!  No more pings from the oxygen compressor at night, no more tripping over the tubes stretching down the hall and, best of all, no more worrying that Timmy might be dropping his sats without us knowing.  Believe me, I had those tubes all wrapped up and ready to go that day!  (It took another 10 days before everything was picked up but who cares?  As long as we don't need it and we don't have to pay any more rental fees...)

Wednesday, November 17th was also a big day.  Daddy's birthday and another weight check.  Alas, this one wasn't too impressive.  Timmy had only gained 4 ounces over the two week interim between checks, bringing him up from 8 lbs. 8 oz. to 8 lbs. 12 oz.  Still so crazy to have him be in birthing range!  (6 lbs. 3 oz. is my heaviest delivery so far so not really my personal birthing range, but I have  friends who have delivered since Timmy was born and given birth to babies weighing the exact same or slightly more than Timmy.  Kind of fun to imagine the babies who are states away and have a live representation.) 

Friday the 19th marked Timmy's 100th day home.  Tomorrow he will have been home 112 days, the same length of time he spent in the NICU.  It feels like forever since he was discharged.  Almost surreal to think back on the NICU now and strange to think that for another few hours he was in the NICU longer than he's been home!

Today was another visit to Dr. Brown, the pulmonologist.  Timmy weighed in on their scale at 8 lbs. 13 oz.  Hoping, hoping, hoping that their scale was just way off from the home health nurses', but since that has yet to be the case...

Timmy's lungs were stellar.  A few upper airway crackles from mucous, but that's not too surprising.  He has been having a hard time with the trach over the past week or so.  The weather has suddenly become much cooler - dare I say cold even? - and much, much drier.  We spent the night after Thanksgiving in the rocking chair doing a lot of nursing.  The dry air dries out his trachea and the trach irritates it, which causes him to make more secretions, which causes us to suction more frequently, which also causes him to make more secretions, which increases the frequency of suctioning even more,...  Interestingly enough, the only thing I have found to truly ease Timmy's irritation is to nurse him.  Even the moisture collar doesn't seem to be enough to do the trick and the artificial noses get coated with mucous before I can get them off and the suction machine turned on.  Fortunately, the humidity doesn't change dramatically from day to day in Arizona all that frequently so we have only had two really bad nights to date.  (Thanks to the first, we now own a cool mist humidifier, extra bottles for the moisture collar and I know at least one way to ease Timmy's troubled trachea so this time wasn't as bad around.  Still depriving of sleep, but at least I wasn't watching my baby hacking wondering what more I could do.)

Timmy was super smiley with the nurse, Jeanine, and the fellow who first checked Timmy over.  So cute!  They passed on their information to Dr. Brown and I knew before he came in that our major discussion for today wasn't going to be Timmy's airway, it was going to be his weight.

When Timmy was discharged, they sent him home with a special preemie formula to add to his bottles to help him gain weight.  I can probably count the number of bottles he's taken for us just by using my fingers.  He so prefers to nurse.  We even tried the SNS (supplemental nursing system) in the NICU and it didn't take Timmy long to figure out how to use his tongue to push the tube out so that he could have just what he wanted.  He's a smart little stinker when it comes to helping us up his caloric intake.

Fortunately, I still have a great milk stash in the freezer, just not sure how to get Timmy to take it.  Our next attempt is going to be giving him a little bit of rice cereal mixed with fortified breast milk to see how many calories we can pack in.

It was confirmed that this is definitely a much-needed course of action when Brandon, one of our home health nurses (Candace is sick), came today and also weighed Timmy.  He was 8 lbs. 14.5 oz. on her scale.  A weight gain of only 2.5 ounces in two weeks.  Not good.  The doctors and nurses would really like him to be gaining half a pound (8 ounces) per week at this point.  The fact that he isn't even gaining half of that in twice that time is really not good.

I do love having him small, but I would also love to hear him so I'm all in favor of Timmy gaining weight so we will be on board for decannulation in 2011.

A few cute random shots from the month.

I LOVE thi worm!  Pasha Grant gave it to Trevy and it has provided us with numerous very cute pictures!

 Timmy has become very fond of grasping things.  He even tries to help suction.  He grabs onto the catheter sometimes and makes it tricky to get his trach cleaned out.

 Yep.  He's still shorter than the width of the crib.  Roughly 21.75 inches at the pulmonologist's office.

 Hey, ladies...

(What a smirk!)

 Nothing so sweet as a sleeping child.

 And s-t-r-e-t-c-h!!!

 And one, and two...

 Also like this rattle ball a lot.  Someone was smart in giving it a nice handle for baby to grab onto.

 Another GQ pose. 

 Callie strapped the doll into Timmy's carseat.  The doll is about a foot long, the same length Timmy was when he was born. 

 November 12th, Timmy's first day in shoes.  These are the newborn shoes I bought when he was about three weeks old for perpective.  They're still a wee bit too big.

 Note the HME (heat/moisture exchanger - the piece that connects to his trach to perform the duties of his nose).   It is essential for him to have it on during the day to keep the trach from drying out.  That thing is constantly popping off.  He has a number of pictures without it but don't let it fool you - we are constantly picking it up and putting it back on.  Definitely not something I will miss post-decannulation!

 He really is sweet and innocent.

 I just love the things his hands do when he's asleep.

 I woke him up taking the first photo.  I gave him his binky and he waved it around.  Got it in, pulled it out...

Plenty more pictures to come.  Hopefully more weight as well!!!