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

...Hello Baby

This week marks Thomas's 37th week...which means that he has officially left his preemie days behind him. (Children born before 37 weeks are considered pre-term, even though a typical pregnancy lasts 40 weeks.) And to celebrate being a Baby, Thomas decided to ramp up his weight gaining to reach 5 pounds!!! In fact, attaining 5 pounds wasn't enough for our little fat man, last night he put on a nice 65 grams, which helped him surpass 5 pounds - and reach a little over 5 pounds 1 oz. To celebrate, we've included a few of our favorite "fat" pictures below. While Thomas is still below weight for a 37 weeker, his dietitian is pleased with TJC's current weight and fully expects him to catch up to a "normal" weight for his age. It is expected for Thomas to lose a little bit of weight while bottle feeding, but so far, he's done nothing but gain.

And speaking of...Thomas is continuing his bottle feeding - and yesterday he took all eight feeds (Thomas is on an eating every three hour schedule) by bottle. He was a little sleepy with his 9 am bottle with TJC mom this morning....but it's to be expected that he gets a little worn out for the first few days of trying 8 bottles a day. You can see in one or two of the pictures below that Thomas's feeding tube was removed. It's nice to see Thomas's face with one more piece of equipment gone!!

We've also included a few pictures of Thomas in his bouncy seat. We're starting to pay close attention to placing Thomas in different positions for exercise and range of motion. He seemed to have liked his first try in the seat as (you can see from the pics) he slept through the experience. Actually, Thomas seems to be sleeping quite well between his feeds lately. Makes TJC mom and dad VERY happy to be seeing that. As excited as we are to get him home, it won't be too long before we join the ranks of sleep deprived moms and dads everywhere....so we appreciate all of Thomas's efforts to get us some sleep wherever possible down the road....

The next few days and weeks will involve mostly a weening off of Thomas's remaining support - both respiratory support and medication. He is presently on 4 liters of flow w/ 25 - 28% of oxygen (we raised his flow last week because he was not yet ready to be at 3 liters) and taking aldactazide (a diuretic), caffeine and iron. Thomas will go home on iron, but his doctors would like to ween him off the caffeine and diuretic before he leaves - so we'll see what our little man feels up to doing.

We'll try to keep you posted on a more daily basis going forward....while Thomas is continuing to do amazing things, he can always use a bit more positive energy. And TJC mom and dad are, as always, extremely proud of our little guy.

Thanks for sharing - we'll be back soon!
-TJC mom and dad

Happy Father's Day...

As of this morning, day 83, Thomas is weighing in at 4 1/2 pounds. His doctors and nurses continue to be pleased with Thomas's progress and are working to decrease the support he is on. Fortunately, so far Thomas seems to be pleased with the decreases in support, and despite lower levels of oxygen and fewer medications, is continuing to remain stable and take small steps forward. IN FACT - two days ago one of Thomas's doctors told TJC mom and dad that's it's time to start preparing....for Thomas to come HOME! It is still a few weeks off, but baring any setbacks (infection, inability to bottle feed, or a slow down in weight gain) there's a chance Thomas could be home by his due date - July 17th.

...So TJC mom and dad are asking everyone to please send a little extra positive energy Thomas's way. Just a little push - to help our little fighter get over his next few hurtles and out of the NICU.

On Friday, Thomas had a follow up to laser eye surgery which he received last Saturday. The surgery was necessary because Thomas had stage three retinopathy of prematurity (ROP)http://www.nei.nih.gov/health/rop/index.asp. Fortunately, Thomas's eye doctor was pleased with the results of the surgery and thinks that his chances of retinal detachment (which generally leads to blindness) has been significantly decreased. ROP is common in preemies born as early as Thomas, as the growth of the blood vessels in the eyes are impacted by the level of oxygen which the body is introduced to during the various stages of development. In the womb, a baby is exposed to 20-30% oxygen - generally, but when a baby is born and requires oxygen support such as Thomas has, the blood vessels in the eyes begin to grow abnormally. Fortunately, most of the worst effects of abnormal blood vessel growth are corrected by the type of surgery which Thomas had. Thomas will, however, be followed by an eye doctor for years to come - it is simply too early to gauge what type of eyesight he will develop.

Thomas is now eating over an ounce a feed - 36mls. (As Thomas gains weight, the amount he eats per feed increases) Thomas is also having three bottles per day - as much of his feed as he can take. So far his record is 25mls....we're hoping to break that in the next few days.

And Thomas is continuing to be adorable....and TJC mom and dad are continuing to hold him every chance they get. In fact, TJC dad started out his father's day holding his little man.
TJC mom and dad want to wish a Happy Father's Day to all the dads out there - old, new and future!

We included a few new pics taken this morning below - enjoy!

We'll be back soon.

Thanks for sharing - TJC mom and dad

Staphing issues in the NICU....

...because there's quite a bit below, we thought we'd include the pictures first this time around!

OK - wow. Where to begin. The last week has been filled with an incredible amount of activity. We'll start with what might seem the scariest (but we assure you it's not really as bad as it first seems) and then move onto the....well....less scary.

Over the weekend, one of Thomas's buddies became a bit ill as a result of an infection. As his cultures came back, it became apparent that he was infected with MSRA - Methicillin resistant Staphylococcus aureus http://en.wikipedia.org/wiki/MRSA. (although to be fair, there's no proof that the MSRA caused the illness - it could have been caused by any bacteria) MSRA poses a particular risk for those with under-developed or damaged immune systems (including premature babies) - so once one baby tested positive, all babies had to be tested. A number of babies tested positive for "colonization" of MSRA - which means that the bacteria was found in their mucosa http://en.wikipedia.org/wiki/Mucous_membrane. As Thomas is one of the babies who tested positive - fortunately "colonization" does not mean infection or illness. It simply means that Thomas has one more type of bacteria living on his skin (we all have some form of Staph infection living on us) than he did a week or so back. All babies testing positive for colonization need to be separated from the rest of the NICU babies to prevent further spread, and the possible creation of a "super germ" which could become resistant to more forms of antibiotics. But as Thomas has been in isolation (which means simply that we need to wear a sterile gown and gloves when in Thomas's room) since Monday - his clinical status has not changed to reflect any infection. In fact, as explained by his doctors, he is no more at risk for infection than he was two weeks ago. So while TJC mom and dad were a bit worried to begin with - once educated, we can chalk this up to one more piece of our total hospital experience. But while infections are a constant risk in long term hospital patients (and today was Day 79 for TJC), Thomas's vitals are being watched even more closely than normal, so if any sign of infection does pop up, it can be treated at a very early stage to minimize any potential illness.

Since that was a mouthful, I'll share the next bit of news quickly. On Sunday Thomas bypassed the FOUR POUND mark, and is today weighing in just under 4 pounds, 3 oz. We've also begin bottle feeding Thomas again - 2x a day - as much of his feeding as he'll take. He's got the hang of it, but the coordination of suck, swallow and breath is exhausting to the little guy - so we spread out his two bottle feedings 12 hours a part from one another- and he continues to take the rest of his feedings by tube.

Last Wednesday, Thomas was able to try out a new piece of equipment - a high flow cannula. If you can remember, up until this point Thomas had been back on his CPAP - waiting for the go ahead to begin cycling onto the cannula again. The largest benefit of the high flow cannula, is that it eliminates the need for cycling. It has the comfort benefits of the cannula, with a higher flow of oxygen (the flow is the force of the O2 into Thomas's breathing passage) which results in a CPAP (continuous positive airway pressure) which keeps Thomas's alveoli http://oac.med.jhmi.edu/res_phys/Encyclopedia/Alveoli/Alveoli.HTML from collapsing with each breath. (As Thomas's lungs are improving, he no longer needs the higher rates of pressure (CPAP) and is albe to rely on the flow and a lower pressure.) Thomas has been doing very well on his new piece of equipment - and his oxygen requirements have been dropping steadily over the past week. The goal is to get to 21% of O2 (the concentation we breathe) with one liter of flow. Right now Thomas is on 21 - 35% of O2 and 3 1/5 liters of flow. It will take him several weeks (and possibly months) to be completely weened and onto room air, but he has certainly been moving in the right direction.

Lately the name of the game has been cheering for team TJC in light of taking pictures, so we only have a few this week. As you can see, most of the pics are taken from either TJC mom and dad's arms....as we're spending all time at the hospital now holding Thomas. It's making leaving him at night harder and harder b/c he's been loving being held (note his several cuddle positions - including burrowing into TJC dad's arm). Such a treat to be able to experience such a "normal" baby thing as our son wanting to be held in our arms more....

As always, we are extraordinarily proud of our little guy !

Thanks for sharing - we'll be back soon.

-TJC mom and dad