preemie follow-up

So,
wednesday was julian's one year evaluation at the CHDD
http://depts.washington.edu/chdd/ucedd/ctu_5/hrifclinic_5.html

He made everyone's day by walking into the appointment with the developmental psychologist!
Yay! Yay! Yay!

He scored for his adjusted age exactly on target for motor skills as a 12 month old 8 pounder at full term would have scored at one year and as an 11 1/2 month old intellectually.

The developmental pediatricians told us that they almost never see micro premies walking before 13 months and have never seen a micro preemie as sick as jules ever walk before 13/14 months. A few doctors came to feel his muscle tone because they were so surprised at how strong he was. They told me they usually see kids on oxygen for 2 - 3 months who have very poor tone and problems and they don't have the opportunity to see babies on oxygen for more than a year very often and they were surprised to see how healthy he was given those circumstances.

They wrote that he is on "signigicantly fortified feeds" due to growth lag or whatever and I realized that on the part of the form where they typically list all of julian's issues that for now, that was the only one in the box -- tackling growth. It is a big one and I am going to focus on that being the center of my discussion on 1/19 when jules has his next pulmonary clinic day. And they cautioned me to be on the lookout for some of the common pitfalls concerning preemies, like attention problems, etc...

I was sick to my stomach walking the long tunnel into UW and quite anxious about these appointments and can't begin to express my RELIEF that they are over. We don't have to go back till he is 2!

Our NICU physical therapist called me personally last night to tell me she went to read the reports from the team and to chat with them about jules and she wanted to tell me how extraordinary our outcome is and how delighted they were with him.



Yay!

update

Hi,

Today, we went to the pediatrician and Jules had gained 13 grams a day bringing him up to 18.7 pounds! So, we are going to continue on the 35 calories per ounce and hope for some big growth by the jan. 19th pulmonary clinic meetings.

His lungs sounded good off oxygen.

Dr. was happy to see his cold was on the way out and that he had gained weight.

We are going to do an echo-cardiogram 1/19th as well as labs, etc... to make sure his heart is not strained by doing so much work to push oxygen around his blood and we are hoping we will get the all clear to be off oxygen.

tomorrow, is julian's one year BIG developmental assessment.

Joy

not growing still

So, we are going up to 35 calories per ounce. This means when we make a batch of food it is:

Recipe for Julian's food:

Six 80z cans pediasure
6 tablespoons Duocal
120ccs simply thick
50ccs pear juice

I hope this works!

We have been off oxygen via nasal cannula for days and nights and so far so good. he still has his bedside oxygen concentrator.

On Jan 6th, he is going for his one year evaluation at the high risk infant follow up clinic. He will spend an hour with a psychologist, an hour with a developmental pediatrician, and an hour with audiology.

Happy New Year!
Joy

not growing

We took jules for a weight check up today.
He has not grown since Nov. 10th.

Still 18 pounds.

The pediatrician said she would give us two more weeks.

We discussed everything from G tube surgery again to a new even higher caloric drink that is on the market.

I got very upset. I hope his brain is getting enough food.

And I'm trying to focus on the positive, like how well he seems to be doing off oxygen and how nice it is to not see tubing all over his face. And how great that he is off lasix and off the O2.

But, I'm praying that he will grow.

Joy

gigi's 5th birthday & no o2 at night& chanukah

We celebrated Chanukah and then in the middle of that we had Gigi's birthday party (since her birthday is on Christmas). It was a Become-A-Fairy (tm) birthday party that Joy designed.

Also, Jules has been off any O2 for the last 3 days. That means he's sleeping on room air. I wake up a few times a night to check his O2 saturation levels, and everything looks ok.

From gigi's 5th birthday and chanukah 2009

From gigi's 5th birthday and chanukah 2009

updates

The good news is that for my 35th birthday week, Jules gave me two great presents:

1. He took his first steps.

2. He went off oxygen during the daytime. This means he gets to wear real boy clothes instead of the pajamas he wore for 14 months straight. The joy of being able to see him wear pants and a shirt that can be pulled over his head is amazing. We are all delighted. He looks so cute in real clothes! And it is so great to be able to really see his face all day.

He did forget to grow for a couple of months, so we had a bunch of appointments to jump on that and he is now on a new food brew. Pediasure, plus his thickening agent, etc.... It has 30 calories an ounce instead of 28, so we hope that helps him grow again. He is still weighing in at 18 pounds.

He will be one year "corrected" on Christmas.

He has developmental assessments from the high risk infant clinic the first week of january. He gets to meet with a psychologist, a developmental pediatrician, etc...

Happy Chanukah!

Joy

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