rosh hashanah

We celebrated jewish new year and it was so wonderful. my dad, scott's parents, and scott's sister merrie came and helped us move into our newly remodeled home and celebrate the holiday.
It was so exciting to unpack and get into our house. We LOVE it.
Jules has been doing okay on his reduced lasix. But, with a pco2 of 53 today, we are unable to wean him off of it any further until he stables out a bit more. He weighed in this morning at 16 pounds 13 ounces and a gain of 12grams a day. It wasn't ideal for a weight gain for him, but it wasn't dangerously scary either.
We have about 20 boxes left to unpack and a bunch of little things to do to declare our house"done," but we are making lots of progress.
And right now, at this very minute, Jessica our fabulous babysitter is pretending that scott and I are out on a date and attempting to take care of Gigi and Jules at the same time. If it works, we may be able to start going on dates again!
I am hiding downstairs and pretending I'm not here in case jessica needs help.
I am close to hiring a caterer for the bris and I am getting excited to celebrate.
Joy
Joy

We are MOVING!

Tomorrow, 9/15!!!!!!!!!!!!11

YAY!

thank you

To everyone who sent the article in the new york times about PTSD in parents of preemies. It is a great article:

http://www.nytimes.com/2009/08/25/health/25trau.html?nl=health&emc=healthupdateema1

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