FABULOUS NEWS!

Hi,

Yesterday, Heidi and I took Jules for a Long Long day at Children's hospital.

First, we had an echo. Jules did not enjoy being forced to lie on his side for twenty minutes while the ultrasound tech worked on his chest. But, Heidi and I took turns holding him down while he cried and sometimes he got distracted by a video they had on in the room. Mostly, it sucked though.

Then, jules got a really grouchy and awful lab tech who took blood from his finger and he was very sad.

After these lovely tests, we got to have some fun with Keren and OT. Jules got to practice with a sippy cup and throw yogurt around, so he was pretty happy. He showed off one of his new words -- Challah and had an all around good time, which was much needed at that point.

Then, we went to meet with the nutritionist. Jules had not gained much weight (just made it to 18.7 pounds) so we decided to go up to more significantly fortified food, taking him to 40 calories an ounce. I'm not sure if that is the end of the line of calorie density or whether we can try something else if it doesn't work, so I'm dearly hoping this new concoction does the trick!

Finally, we met with the pulmonologist. He had much good news to give us. here it is:

1. The prelim results of the echo were normal, showing no stress to julian's heart from being off oxygen and his prelim blood work was good as well. But, we have to wait for the radiologist and the rest of the labs to come back to confirm this.

2. Given that, we can do a two night trial without the oxygen concentrator that blows oxygen into his crib, (where we wake up every two hours and test to see if jules has enough oxygen saturation) and if it looks good, we can get rid of the machine.

3. If it looks good, they will bring in another type of equipment to measure him all night long and do a print out or record to a chip, so they can prove he is done with oxygen for good.

4. If all that works, we will start cutting the other diuretics he is on in half and then eliminating them, working toward only having him on the one medicine for his reflux.

5. Given how great Julian looks with his walking, no hospitalizations so far this winter, and coming off oxygen, we got the best news of all -- At the END of April we will break our year-long hibernation and isolation. Jules will get to LEAVE the house!!!

Yay!

I am so happy.

We will be able to leave the house as a family, go to restaurants, go to parties together, have people come visit and gigi can have play dates with friends. It seems to good to be true. I am so excited.

And we can also take him on a flight at the end of April to Scott's sister merrie's baby boy's bris in New York!

When we told Gigi the good news that jules could fly on airplanes now, she said, "Aloha!" and had visions of Hawaii dancing in her head. We had promised her that when the day came he got off oxygen, we would all go to Hawaii, so I am going to plan that trip too! I am so very happy.

We do have to take Jules to a special flight simulator test to make sure he can handle changes in cabin pressure. If he can't they will give him special oxygen just for the duration of the flight.

And we will have to find a hotel near merrie's place in new york that will give us a big fridge to hold all his weird liquid food stuffs. But, that is it and we can go!

Finally, because of this, Jules will get to meet other children his age for the first time at a twice a week preschool at his special Boyer Clinic where his physical therapist works. He will start preschool that goes for two hours 2x a week at the end of April.

I am so excited for him! And for us!

Joy

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