Dr. visit

Today was a great day for jules at the doctor.

He weighed in at 16 pounds 8 ounces. He had gained 15 grams a day for the past two weeks!!!! Let's hope he keeps that trend coming.

He had a pco2 of 39 on his reduced lasix dose, so we are cutting it in half again. No more night time lasix for him. We'll see how he does without it.

We tried taking him off oxygen today and that was not a success. Oh well.

In other unreported news:

1. Jules got his first tooth.

2. Jules started making D, B, and J sounds. There is still a concern about his speech, so he is having an audiology appointment 9/21 at childrens.

3. Gigi and Jules both have to get flu and swine flu vaccines when they arrive in two weeks.

4. Today was Gigi's first day of school and it was so great to get back into the school routine.

5. We are counting down the moments until we move back home next tuesday, 9/15. We spent a hot date night at Loews tonight and doing a walk through of our home.

Goodnight,

Joy

New pictures

Updates

Hi,

Jules had his eight month high risk infant follow-up appointment this week. It was somewhat intense.

The good news: The average range of scores for a baby on the test is 85-115.

At four months, jules scored a mild delay with one standard deviation below that when he scored in the low 80s for motor skills and intellectual aptitude.

At 8 months, he had done a little catch up and scored in the 90s as an average 8 month old. He was crawling and cruising around the test-taker's office and having a lot of fun trying to eat every test object she put in front of him.

The concerns from the visit centered around how he has fallen from the 10th to the 5th percentile on the weight growth chart, hasn't appeared on the length growth chart, and is freaking every medical person out by still being dependant on Lasix.

The part that was intense was when our evaluator, who happened to be his NICU physical therapist related how impressed she was with him, especially since he had nearly died.

I was QUITE taken aback and asked her what she meant.

She replied that hadn't I wondered what all the friction was about between our family and the doctors, that our situation was riddled with angst because no one knew what to do and he was dying. I said he wasn't dying, but maybe on the way to a tracheotomy. She said that when a baby is headed for lung and heart failure and they can do nothing more, than as a last resort they do an intubation.... but that is BECAUSE the baby is dying.

I started crying. She started crying. She told me that after working at the UW NICU for decades, most cases like ours did not end well. In fact, Jules did the best she has ever seen on her test for a baby born as growth restricted as he was at 29 weeks and/or who has lung disease.

Our visit ended with a painful discussion regarding the upcoming cold and flu season. She is very worried for us and implored me to keep jules away from all people, out of any type of baby music class, etc... and it ended on a strange note. From her perspective, Jules is fragile and sick with lung disease. From my perspective, he is struggling with a disability that I hope is temporary.

She pointed to the oxygen and the lasix and told me "Jules is sick." I left promising to be extra careful.

Joy

Updates

Hi,

Here are new pics!

Hello Again!

After a tough summer where I really struggled emotionally and processed a lot of what happened last year, I'm back and blogging again.

Today, I have just two things to report.

Firstly, Jules is doing very well. He is on a reduced amount of lasix, still lingering on oxygen, growing is going just okay, but he is a gross motor rock star. He is a super cute little buddy. More about this later.

Secondly, after the above mentioned emotional turmoil, I have realized how sad I am about Julian's birth and homecoming circumstances and ordeal. What I miss the most is that his birth was never celebrated. There was so much fear and worry overshadowing his arrival in the hospital and at our home.

So, in an attempt to heal just a little from that, we are going to welcome Jules with a bris celebration at home. Here are the details:

Julian's Bris/ Take 2

A bris without the snipping.

Sunday, October 18th at 10am

At our house in Seattle

Rabbi Borodin officiating

Please email me your address if you would like an invitation. I look forward to celebrating with all of you.

Love,

Joy

briefly back home again

we are having a heat wave here in seattle. It is 97 today and getting hotter tomorrow.

Did you know babies with lung disease can't breathe when it is over 90 and humid?

So, after a visit to the pediatrician's office this morning, we decided that living without air conditioning is too risky for Jules.

We left our quarters for the past four months for three nights in our previously renovated downstairs. I am having flashbacks of my c-section which was the last time I lived down here because I wasn't able to climb stairs.

Gigi is in one guest room. Jules/joy/scott in the other.

And we are handwashing a lot of bottles because our kitchenette does not have a dishwasher.

Here is the good news. It is 97 outside, but 72 in here. We can swaddle jules in blankets again! Yay!

Jules weighed in at 15 pounds 7 ounces today. Yay! He gained 17 grams a day again. Go Jules Go!

We are holding steady at a 30% reduced lasix dose and preparing for thursday, august 6th's big pulmonary clinic day where we will meet with the team of doctors, the nutritionist, nurses, and of course occupational therapist Keren to discuss julian's progress. Guess what is not on the table?

G-tube surgery! We are ALL so delighted not to be worried about that this week.

Goodnight from 36th avenue.

Joy

horrible night

Last night was the worst night we have had since jules stopped having night nurses.

Thank Goodness gigi was sleeping over at our hold house with miriam, bleys and nick.

Scott had to get up at 4:30am to make a flight to california. Jules refused to go to bed until 10pm and then woke up on and off until 3:30am when he chose to be wide awake and ready to party until six thirty AM! Scott kissed me goodbye and headed for the airport while I tried to coax Jules to sleep and freaked out because he kept pulling his oxygen prongs out and I couldn't tell if he was breathing or not. It was awful.

I am so exhausted and trying to come down from the anxiety with the oxygen. In my fatigue, I also kicked over the oxygen tank and freaked out. If the top snaps off, the tank turns into a torpedo and can break through the wall. I was wigging out imagining it ramming into the condo next door!

Jules also threw up his meds last night and this morning, so I am seriously worried about thursday mornings lab tests!

Joy

Nice day

Jules is having fun because his aunt Miriam, uncle Bleys, and cousin Nick are in town and spoiling him with lots of attention. He is loving Nick's guitar playing and having a great time.

We are watching him closely as he undergoes his first lasix weaning trial, down 30% for this week. He has labs on Thursday morning to check and see if removing the medicine has had an adverse impact on his lungs.

He is cute, cuddly, snuggly, and awesome.

Joy

Good News

Jules had a great day today.

Firstly, he slept a four hour stretch last night. It was SO nice for us.

Then, he went to see his new pediatrician. His previous doctor just left to do AIDS work in Tanzania.

His new doctor told us the following:

Jules has a head in the 40th percentile.

His weight is the 1oth.

His length is still 2ft. He is not on the growth chart and is even a little worse off then the last check-in.

However, since he gained 17 GRAMS a day for the past two weeks, we are out of G Tube stress land and can be pretty happy that Jules seems to have dodged that bullet! YAY YAY YAY!!!!!

Go Jules! He is so amazing.

If in the next year or so, jules does not make progress on length, he will go to a special endocrinologist to see what to do.

But, although most kids take two years to grow well, some kids take until they are as old as ten to make length progress.

She thought Jules was advanced in his motor skills for his corrected age. This is because he chose to move like a baboon on top of the examining table, resting on his palms and standing up on his legs in one of his crawling attempts. It was pretty cute and funny.

She thought he looked great and ventured to say we might just be out of the Scary Times.

She wants to run a weaning lasix trial next week with a blood test after seven days to see if he has major set backs.

And that's the story!

Joy

sleepless in seattle

last night he was up every twenty minutes from one forty until four am.