So here we are....

We are thrilled to share that Thomas has been home since last Wednesday. Our little guy is settled into his new routine here quite nicely....he's found that he has a whole host of people to cuddle with and is taking full advantage. We've been having a blast playing with all of Thomas's new toys and gear, and we're working our way through all of our big animal-wrap towels during bath-time. And in true new-baby fashion all of us at home are now nocturnal. :)

Thomas had his first checkup with his pediatrician last week and it went well. Once we can establish that Thomas is gaining weight nicely at home (our next appointment is next Friday), our main priority will be to wean him off his oxygen. In the coming weeks Thomas has follow-ups with his pulmonologist, eye doctor, cardiologist and neurologist and will begin programs run by both the state and by the hospital monitoring his development. But, instead of taking you step by step through all of that with us, we've decided that this entry will be the end of the TJC blog. It's time focus on Thomas as our child, and less as a medical marvel. We thank you all for your prayers, strength and love over the past months. And while we wish we could say we were inviting everyone over for a huge party, a main priority is to keep Thomas healthy and away from any unnecessary germs. Our little family is going to be on a bit of a lock down for the remainder of the year, stretching through next winter. But maybe we'll be able to have a celebration of the one year anniversary of Thomas's homecoming next August!!!

Below we've shared a final few pictures - from Thomas's first trip in his car seat, to settling into all sorts of comfy positions at home. We remain, as always, extraordinarily proud of our little man.

Thank you for taking some time out of your busy lives over the past few months to share time and thoughts with our new family.

- Michelle, Bart and Thomas.

and then there were two....

....days that is. The sheets are washed, onesies folded and put away, diapers and wipes are organized and ready to be used....because Thomas is coming home!!!!! We have a due home date of this Wednesday, August 8th. And as you can see from the pics below, Thomas is pretty happy about his upcoming change.

The little man is currently weighing in around 8 pounds, 1 oz, and is on 1/2 liter of O2. Thomas surprised all of us by being able to not only withstand being on 1/2 a liter, but flourishing on it. He had an amazing blood gas today http://en.wikipedia.org/wiki/Arterial_blood_gas with a CO2 level of 42 - we had previously not seen him below 70. Without getting into all the details (we figure we're given you enough medical data by now), 42 is fantastic - especially for a BPD'er.

So TJCmom and dad are busy trying to catch up on 136 days of missed sleep....but we figure we won't really be caught up until Thomas goes to college. :)



We could not be more proud of our little guy. Please enjoy the pics and we'll keep you posted!






Thanks for sharing, we'll be back soon!
-TJCmom and dad

adjustments and tweaking...

As of this morning, Thomas is weighing in at 8 pounds!!!! He is still on his 2 1/2 liters of flow, but for only a fraction of the day. For the rest of the day, Thomas is on 1/2 liter, with minimal oxygen. We have not yet made the switch to full time on the 1/2 liter because we're waiting to make sure he is definitely strong enough to do so. And even when we do make the switch (which could be as early as this afternoon) Thomas will have to stay in the hospital for a good few days to be monitored. Which means....that this Tuesday will not be the day we come home. And it may mean that we do not come home until early next week. But, when you think about it, in this instance, coming home later is actually an excellent thing because it would mean Thomas coming home on less support. We'll see what the next few days bring, but for now, things are looking pretty excellent in our corner of the NICU.

That's pretty much all of our news for now. We've included some new pictures below - enjoy!

And we are, as always, extraordinarily proud of our little guy.

Thanks for sharing, we'll be back soon!

-TJCmom and dad

And the countdown begins.....

As of this morning, Thomas is weighing in at 7 pounds, 6 ounces. He is currently on 3 liters, holding steady around 25% - and Thomas has begun to use the regular cannula 3 hours a day, 2x a day - on one liter at around 28%. The reason for the trial time on the regular cannula is so that Thomas can be portable when he comes home - as he will not be so with his home high flow setup. Although TJCmom and dad have discussed adding more time on the regular cannula, TJC's doctors do not seem to be in the mood to rock the boat before he goes home. Any further weaning of Thomas's oxygen will be planned by Thomas's pediatrician and pulmonologist, and executed by TJCmom and dad at home.

And, if you hadn't guessed, all of this mention of "before he comes home" is because we have an estimated discharge date for Thomas - August 7th!! As heaps of data and every doctor and nurse in the NICU have indicated, babies seem to do exceptionally well once they get home...and TJCmom and dad can't wait to see what kind of progress our little guy can make once he's in his own crib!!

We are, as always, extremely proud of our little guy.

We've included some of our favorite pictures from the last week - enjoy!

Thanks for sharing, we'll keep you posted as to how the next week goes!

-TJCmom and dad

lean and mean....

As of this morning, Thomas is weighing in at 7 pounds, .8 ounces. Thomas passed the 7 pound mark on Tuesday, but as a result of receiving a new dose of lasix and being put back on his diuretic, his weight is down a bit from his high of 7 pounds 3 oz. The doctors and TJCmom and dad decided that being back on the diuretic was the best course for Thomas because he was gaining a lot of weight and was not making the corresponding respiratory progress. And fortunately, since being back on the diuretic, we have been able to begin to ween Thomas back down on his oxygen flow - he is currently fluctuating between 25 and 28% - having been stuck at 30% for the previous three weeks.

Thomas had his first field trip this week - down to have his first MRI - and all of Thomas's doctors are pleased with the results. It seems as it the brain hemorrhage Thomas had during his first week is resolving itself without damage to his brain tissue. Only time will tell how the bleed will affect Thomas's development, but for now we seem to be in a good place.

To give a little perspective on how far Thomas has come, his due date was this week - the 17th. And now that Thomas is full term, Team TJC is looking to get him home soon. We're still not sure exactly when that will be, but we're all working to get our little man ready. He is now taking his milk fortified with the powder that he will be coming home on and TJCmom has been trained to give him all his medications. So we'll see what the next week or two bring.... but whenever Thomas is able to come home, TJCmom and dad are, as always, extremely proud of their little guy.

We've included some of our favorites pictures from the last week - enjoy!

Thanks for sharing - we'll be back soon.

-TJCmom and dad

Day 111...and still going strong

As of this morning, Thomas is weighing in at 6 lbs, 13.5 oz. He is currently on 3 liters of flow at 30% O2. Thomas's eye doctor continues to be pleased with his progress and Thomas's primary doctors are pleased with his respiratory progress. We've been in a bit of a holding pattern for the past few weeks, unable to successfully ween Thomas's O2 flow below 3 liters, but no one seems terribly concerned. There has been some discussion about taking Thomas home on his current mode of support - his high flow cannula - but we're all ("all" being TJC mom and dad, and TJC's doctors) waiting another week or so to see whether we are able to continue to ween Thomas before moving towards making any decisions.

We've added a mobile to Thomas's crib this week and have found it a fabulous way of calming him out of his temper tantrums....you'll see it in a few of the pictures below. Other than that - and a possible MRI this week - things are fairly quiet...nice and quiet in our corner of the NICU (knock on wood, fingers crossed, hopping on one foot..)

As always, TJCmom and dad are extremely proud of our little guy.

Below are a bunch of new pictures - enjoy!

Thanks for sharing - we'll be back soon!

-TJCmom and dad

Day 99...

As of this morning, Thomas is weighing in a bit over 5 lbs, 11 oz. Thomas is continuing to bottle-feed, we have been able to lower his oxygen flow to 3 liters and Thomas's aldactazide (his diuretic) has been discontinued. The plan for the next few days includes lowering the oxygen flow to 2 1/2 liters as soon as Thomas's doctors think he can handle it, and lowering his caffeine dosage. Thomas's eye doctor continues to be pleased with Thomas's eye development, and in fact, Thomas has earned a pass for this week - needing to be examined every two weeks instead of every week.

To be honest, (knock on wood, fingers crossed, hopping on one foot...) things are pretty quiet in Thomas's corner of the NICU - and that's just the way we like it. Because our little man is quickly becoming our little fat man, it's only a matter of time before Thomas grows enough lung tissue to replace the diseased tissue. No one can say for sure yet when Thomas will be able to come home, but he is certainly taking a lot of steps in the right direction....which would be away from Hackensack and towards Montclair. :)

So TJC mom and dad are pretty much just hanging out with our little guy each day, watching his personality (and the rest of him) grow. Long gone are the quiet, gentle days of preemie-dom. Thomas is now a crying, kicking screaming baby....and believe it or not we are loving every minute of it!!!!

We are, as always, extraordinarily proud of our little guy.

We've included a few new pics below - enjoy!

Thanks for sharing, we'll be back soon!

-TJC mom and dad