Amazing Eating

Jules has had two amazing days, pulling in 720 and then 760 today! I am so hopeful for tomorrow morning's pediatrician visit.

And he crawled backward this morning, which was pretty awesome in front of Kathy, his physical therapist through the State. He also clapped his hands for her, correctly held some one inch blocks, and did some cool sitting up, yet still playing with toys manoevers. Jules is doing really well and it is sooooooooooooooo nice to see.

Joy

good eating

Jules moved up a bottle size this weekend, doing his best eating yet.

At one sitting, he ate 150 ccs of food and regularly consumed 130.

Our car warned us three weekends in a row that it wasn't feeling well,

so it went to the mechanic all day saturday. Now it has new break pads,

rotors, a new coolant system, some new oily stuff, and feels a lot better.

We visited our house for the first time to see insulation and dry wall.

That was really nice and we are excited to be moving to the latter half

of the project and looking forward to moving back in the fall.

Jules has a big weigh in on wed. at the pediatrician. We hope he has been

holding on to his calories and gaining enough to keep that NG tube OUT!

I am even fantasizing about returning all the NG equipment. I really really

want to throw the NG pump backpack off the roof at Kartik's, but I

am containing myself.

Joy

doing well

Jules is eating his food goals, 7 bottles a day, one half hour each time, plus three solid food feedings. Just the bottles alone take us 3 1/2 hours of time each day!

But, we are very hopeful that he is growing. He will get a weigh -in next week.

Development wise, he is sitting up unassisted for long periods of time.

We LOVE having No NG tube. Love it. Love it. Love it.

Unfortunately, he is having a rough time with oxygen weaning and desats when he sleeps. So, he will be on oxygen for awhile.

Joy

endless GERD

Sometimes after hours of listening to Jules cough and rushing to snatch him up and hold him upright so he doesn't vomit, Scott and I get really grouchy.

Tonight was a LONG night of coughing, spit-ups, gagging, and reflux hell.

We just handed him over to our night nurse and are so grateful to be going to bed.

What are we going to do in July with no night nurses?

I shudder to think about it. He has been coughing over and over and over and over again and the doctors won't increase his antacid medication. It is hard to see him suffer and we are EXHAUSTED tonight.

So, we are going to sleep. My friend tylenol PM will hopefully help me sleep deep enough to not hear all that coughing in the next room.

joy

jules doing well

From Early June

We checked in with the pediatrician today and Jules is still gaining weight. he weighs in at 13 pounds 15oz today.

Today was good for us because it marked two weeks with NO ng tube. YAYYYYYY!!!!!!

And, today, Jules cleared the anemia of prematurity diagnosis and got to drop TWO medications. Now, he only has to take 6 or 7!

It sounds kind of silly, but it really makes a difference not having to measure out with syringes, those three old medications and since his food tastes a lot better without them, he doesn't vomit up his med bottles as much.

Jules has been off oxygen for an hour or two each day and is doing very well.

Here is what has been floating through my mind:

When I am at the grocery store (the one I go to is right by children's hospital), I wonder about the other people shopping. Are they wandering around with their grocery carts feeling hollow and lost, sick to their stomach and white knuckled, drifting through the aisles knowing they have to make dinner for their families, but struggling to even figure out what to shop for while their baby is in the ICU? Worried that right now as they shop, something is going wrong at the hospital and that they aren't there to help their child? I am haunted in my mind's eye by what it was like for me to just get by with life during that time and I look around, wondering who is in that kind of pain right now? I am so glad to be free of NICU jail and the hell of being trapped in the hospital for nearly six months. But, I am literally haunted by myself from that time. the ghost of me literally follows me around certain places.

When I hear people complaining about random stuff. It is just too soon for me to have any perspective. I am still too close to the trauma of our situation. I think about how grateful I am to be away from the fear in the hospital. I think about what it was like to spend every moment willing Jules to get better and to live and I just don't care about a lot of problems. Mine or anyone else's. I don't think I will ever care about some things the way I used to.

Jules laughing is the best thing in the whole world. Even though when I make him laugh, it gives him the hiccups and he often spits-up, I still can't help making him giggle. He is such a happy, jolly, little old man. He has this raspy almost old-smoker's voice from his lung disease and when he laughs, his whole body laughs. You can even see him smile when you stand behind him. He smiles so BIG that his ears stretch and you can tell he is grinning as you walk on up.

Joy

Great news!

Today was our day of reckoning at pulmonary clinic (where the team that followed him in the hospital from the pulmonologist, to the dietician, to keren from occupational therapy, etc...) came to evaluate Jules.

Here is what transpired:

1. On the subject of eating, Jules has been given the go-ahead to continue with full oral feeds and we are putting off the G tube surgery as well as re-inserting an NG tube if he can continue making the kind of progress he is doing. YAYYYYYYY!!!!

Right now, he is gaining 12grams a day and we are aiming for 15. Right now, he is eating about 600ccs of liquid formula a day and we are aiming for 630 as the next hurdle and then 700 so we can ditch the use of some noxious vitamins that make him hurl.

Today, Jules was 6.3 kilos which is about 13.9 pounds!

We were cautioned to not be too eager because kids like him could wake up and refuse to eat or regress and then it will be back to NG-city and G tube trajectory.

We are trying to get out of the upper-GI study and other studies necessary for the G tube surgery since most likely they would make us repeat them if we do the G tube surgery in september if things go poorly over the next few weeks.

2. On oxygen -- Jules went for 2.5 hours without oxygen today and still had blood saturation levels of above 92%. This is most excellent! It means we can begin to take him off oxygen for an hour a day, then two hours a day, etc... moving toward being off oxygen during the day time and just hooking him back up at night!

3. Social isolation.

We are still in enforced people restriction. For the summer, we can go to a restaurant with him if we like, but no day care or exposure to other children if possible and no passing the baby around to other adults, etc... Sigh. And this will get more strict in the fall when cold and flu season starts. It sounds like getting through our first winter is going to be quite the ordeal. We have been told to expect hospitalizations, etc.... Yay.

4. On scary medications. Jules is on about half of the lasix dose he was on when we left the hospital. The number one goal is to get him off lasix. That can happen after he gets off oxygen. So, for now, this one is tabled. And we will be checking his bone strength with a mineralization study as well as doing a hearing test to see if lasix is ruining either of those.

In conclusion:

This is what the pulmonologist wrote on his clinic visit, "Jules looks the best that I have seen him from a social and work of breathing standpoint and he had a great blood gas! Good weight gain!"

SO happy to have good news!

Joy

jules update

He is practicing sitting up unassisted, working hard to pull his knees under while on his tummy in preparation for crawling, and busy figuring out how to hold things with both hands and pass objects from one hand to another.

He is doing okay on his eating without an ng tube. We are highly concerned that while he is taking in the required calories, he is not gaining weight. We will find out thursday.

We scheduled his upper GI study and surgery preparationg assessments for the weeks following this eating challenge.

With scott's parents here to watch over gigi this weekend at their hotel and Gigi's babysitter watching Jules, we went out to celebrate our anniversary with a yummy dinner at Canlis and the first movie since November when the trauma therapist advised us to go to the movies to escape the NICU and we tried to watch James Bond but couldn't even concentrate and just kept calling the ICU for updates. It was really really nice. A glimpse at a normal life and we loved it.

Joy

jules news

Jules is doing a "cautionary week-long trial" to see if he can gain weight and eat his total food volume in calories through a bottle with no night time assistance from his feeding pump/ng tube.

He seems to be doing okay with eating the volumes required of him, but we aren't sure if the exercise of eating all those bottles is burning the calories at too rapid a clip. He may not gain weight after all.

We are trying not to get our hopes up too high and have remained on course, visiting with the surgeon yesterday and scheduling a G tube surgery for Jules. In order to have surgery, he has to have a special GI study and be approved for sedation by the same doctors who freaked out last time. So, I am not quire invested in the entire thing.

In the meantime, he looks adorable without the NG tube and is a lot easier to handle without fear of pulling it out all the time. He is more comfortable and so are we!

Here's to hoping he gains weight at the end of the week!

Joy