Shopping

We went shopping for Jules today. We hunted for baby monitors, diaper pads, pacifiers, toys, and other supplies. It was really nice to do something "normal," for him to get ready for his arrival at home. Tomorrow, we are setting up his crib. 

We are getting so excited for him to come home.

He spent the day charming the nurses, playing with Gigi, snuggling, snoozing, and binky training. He made his first attempts at laughing on Friday and has discovered his fingers.

Scott learned how to insert the NG tube. It was hard to watch, but easier than I expected.

Julian's cranial ultrasound came back unchanged.

David Loren came to visit and prepare us for Julian's bris via medical circumcision Tuesday night. We are going to have a real brit milah for Jules in the summer, when hopefully he is healthier and able to be around large groups of people.

Goodnight,

Joy

Jules coming home!

Everything at the hospital is geared toward Jules getting ready to come home next Thursday.  He had a pco2 of 58 today and is now 9 pounds!!! Pretty amazing coming from 1.5 pounds.

He is 50 centimeters long.

Before coming home, he will have:

A cranial ultrasound

A chest xray

An ENT consult to look at his "tongue tie"

A blood test to check on his bone mineralization

A hearing test - He passed!

A car seat challenge test

A circumcision

Another dose of synagis

A round of immunizations - he had those today.

Scott and I have to learn how to put the nasal gastric tube in,  figure out how to administer medications through a medical infusion pump, and learn about how to handle the oxygen tanks coming home with us.

Jules will have to have weekly blood tests at a hospital for his pc02 levels and we will probably see his pediatrician once a week as well as physical and occupational therapy twice a week. He will be followed at the pulmonary clinic as well.

We are very excited and overwhelmed as we coordinate all this stuff and try to hire nursing help to check in on us at home and maybe even work night shifts if we can swing it.

Joy

date set

We met with the team today and put together a plan to bring home Jules on Thursday 3/5. This is very exciting and nerve-wracking news.

Is it really happening?

We have a conference scheduled for two pm tomorrow to discuss a discharge plan for Jules!!!!!!!

They expect him to go home the first week of March!

I don't know what to think. I am so excited and so afraid of getting my hopes up.

They want to send him home on:

1. continuous drip feeding tube going from his nose to his stomach. Also called NG tube.

2. Oxygen tank

3. Potentially a machine to administer his medications slowly through his NG tube.

We will be running a mini-hospital out of our home. But, I no longer mind the idea. It will be so nice for our family to finally be together again.

We have been waiting 137 days to bring him home! 

almost FIVE months.

Joy

Julian's story

Hi,

I wrote candidly about this entire experience on my dear friend Sally's blog, where she interviewed me about our story:

http://thebossyblog.blogspot.com/

My friend Bonnie did the most important thing you can do for a friend. She spotted signs that I was in potential health danger with my pregnancy and made me go to the doctor. She went so far as to hang up with me on the phone, telling me "I will not talk to you until you hang up and make an appointment with my high-risk preeclampsia specialist." And then she hung up.  So, thank you Bonnie. If I hadn't gone to Dr. Easterling, both or either Julian and I could have died. 

On my friend Sally's blog, she interviews me about the experience and I wrote about the signs that Bonnie saw.  I hope other people will read about them and keep their eyes on their pregnant friends, so that they can be in a position to help someone else someday.

Joy

Jules @ 2months

From Jules at 2months corrected

taking wagers

I am taking bets on when you think Jules might come home.

Here are the facts:

He has been hospitalized for 135 days today. He is inching up on nine pounds.

Four weeks ago, the attending on at the time thought we would be home in two weeks.

The attending after her (two weeks ago now) thought it would be at the very least seven weeks from his watch.

The last attending started his week last Sunday telling me Jules had no reserve and was treading water, but when he checked out this week from rotation, told me Jules would be going home in a week or two.

The new attending has gently indicated that our new reputation at the hospital is of the parents who are too scared to take our perfectly stable baby home. He believes a week or two and Jules will be ready to go home with his oxygen tank, his feeding tube through his nose, and they will have trained scott and I how to admister the continuous drip of food and numerous medications.

So, for all you loyal readers out there who have been along the ride with us, please weigh in with a date you think he will come home. A special prize goes to whomever is correct and we look forward to celebrating with you all when that day comes.

Goodnight,

Joy

5th day

of pc02s in the fifties. Jules rings in with 57 this morning.

Scott is going to spend the day at the hospital. I am going to try to take care of gigi and myself while sick. I feel cindrella and sleeping beauty will be how I am going to get through the morning.

Joy

another good Jules day

Jules had a pco2 of 55.

He had his oxygen turned down from one and a quarter liters to a half of a liter.

He slept away the day.

The new attending started and he was AMAZING! Loved him.  He started his converstion with me like this, "I'm friends with last week's attending, but we have different working styles. I understand you have been through a lot. I support family involvement and will work with you guys. I think Jules is doing better. If you think about it, he has grown bigger so is therefore on less lasix than he was last week. He is on less oxygen and is tolerating gastric feeds. I think he is doing better."

He did let me know that Jules is at risk for significant long term hearing loss with all the lasix he has been on. That was the first time anyone had mentioned this.

Unfortunately, I caught Gigi's latest virus and my doctor banned me from the hospital until I see signs of respiratory improvement. I have a horrendous deep chest cough and haven't slept much. I am hoping with the inhaler she prescribed today, I will at least feel better enough to sleep. And I am SO SAD not to be allowed to visit Jules. I hope I see signs of improvement by Sunday.

Gigi had a great day. Laura is here visiting from New York. Matt Braslow visited from Colorado.  We Silvers had a nice shabbat, despite my barking cough.

Going to sleep hoping Jules has a good lab set tomorrow morning and that he is able to handle the decreased oxygen.

Goodnight,

Joy

good day

Jules had a great day. He slept the entire day enjoying a PCo2 of 52!

Unfortunately, since he is doing well, that means it is time to challenge him. So, tonight they will try taking away some oxygen to see if he struggles to breathe. Sounds like a fun night for Jules.

Joy