quick update

The bris was fabulous! thank you so much for coming to celebrate. We had many travelers:
From New York - Jason and Merrie Post, Laura Tanenbaum
From Philadelphia - Bruce and Ilene Silver, Ande and Jimmy Adelman
From California - Miriam Silver
From Chicago - Tiffany and Jerry
From Virginia/St. Louis - Krystin and Bill Drake
From Washington DC - Kirk and Kim Drake

We will post bris and baby shower pictures soon.

On Sunday night, Gigi came down with a fever. She has been home from school for 4 days in a row, but is going back to school tomorrow. She was tested for swine flu at the doctor's office and tested negative on the rapid office test. It isn't very reliable, so Jules is on tamiflu just in case it might make a difference for him. We have been told kindly that he doesn't have good odds for surviving swine flu and that would most likely end up on the ventilator. So, we are crossing our fingers that gigi doesn't bring him swine flu and that the vaccine arrives soon.

Heidi caught gigi's illness or picked up her own bug and has been gone wed, thursday, and will be gone friday. So, scott has had to be home from work since we were told by the doctors to keep Gigi and Jules completely separated on different floors of the house until she was well. They were reunited tonight after four days apart with much affection.

Goodnight,
Joy

Julian is One

From Jules' First Birthday

Jules made it to one. In 365 days his weight has increased 11x, he went from four tubes to one and from living in a clear plastic box to living in a fancy black cage. He crawls (in fact he stepped into the dishwasher today), he gurgles and gets happy and sad and mad. We couldn't have made it this far without all of your help.

Here's what I wrote 1 year ago (on 15 Oct)

Dear Friends and Family.

Jules arrived on Friday October 10th at 4:35pm, about two and half months early at 29 weeks and 3 days. He weighed about 1.5 pounds (1 lb 8.8 ounces) -- his head is about the size of a fist and his legs and arms are about the width of a chapstick. Our doctors made the decision to deliver him after weighing various factors, including a very small baby ("severe IUGR"), preeclampsia, and substantial decelerations in his heart rate. After making the decision, they delivered Julian by urgent cesarean section and then quickly transferred him to the Neonatal Intensive Care Unit (NICU) where he'll hang out until he's ready to come home.

Julian derives from youthful in Latin.

Jules is a fighter and is making slow, steady, "expected" progress for a micro-preemie. Over the next two months he'll start by taking his first steps to breathing on his own, eating breastmilk/formula and eventually over a long, bumpy path to coming home. The overwhelming, vast majority (95%+) of kids like Jules survive and about three quarters of them catch-up to "term" babies after a few years.

We are proud to be parents again but terrified and exhausted. And of course, Gigi is very excited to be a big sister. We're so happy to receive your messages, prayers, phone calls, emails but we're not quite sure how to feel about gifts right now.

You can continue to follow Jules' progress and see pictures at http://babysilver2.blogspot.com. Some of these pictures can be a little scary and may not be for everybody.

Happy New Year & Love,

Scott, Joy, big-sister-Gigi

P.S. The Brit Milah will be postponed until medically and spiritually appropriate.

Three more days

until Julian's birthday!

I have a lot of complicated feelings about his birthday that I'm trying to work through.

Joy

jules off LASIX!

Yay!

Jules went for his one year pulmonary clinic yesterday. It took a few hours, but he had his blood taken for labs and served up a PCo2 of 42! So we stopped the lasix cold turkey and are watching him for signs of respiratory distress. So far, so good. The docs were so pleased to see him end his year long dependence on a drug they were very worried about, so everyone was thrilled.

Jules weighed in at 17 pounds and 26 1/4 inches, which if you correct for three months early, puts him in the 0.0 percentile, but that is better than losing weight or falling off his growth curve. Since, he was born in the 0.0 percentile for height and weight, he is keeping up with his curve, so that is good.

He had a chest xray and occupational therapy and we picked up his special meds from the pharmacy. He is now on just two diuretics, his reflux med, and his potassium and sodium chloride.

He is working on waving hello and goodbye.

We have moved into and unpacked all the boxes on our kitchen level and bedroom level. Starting this weekend, we are going to unpack and excavate our "all the way downstairs' level, which will be a HUGE project. We are working to be completely moved in and unpacked for Julian's bris on 10/18.

Love,

Joy

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