developmental test

Jules had his big four month adjusted assesment today.

He scored as a three month old.

I will write more tomorrow.

Joy

pity party!

You have GOT To be kidding me!
Today, I discovered that I am the one percentile of american's capable of getting SHINGLES two times before they turn 35.
http://www.epigee.org/shingles.html
Unfortunately, as uncomfortable and painful as they are, it was an especially terrifying day for us because of jules. Too young to receive the chicken pox vaccination and at risk because of his birth weight, we scrambled with infectious disease specialists to come up with a plan for him. Since VZIG is no longer being manufactured, they decided to give him the same treatment I am getting, hoping that the anti-chicken-pox medication will give him a chance to fight it off. His best hope is to get the drugs withing 96 hours of exposure, so we are cutting it close.
I am allowed to touch him if I wear gloves and they would prefer minimal exposure. It will be a week or two before I can really interact with him again. I am very sad.
And to speak from my heart, I was really at the breaking point before this happened. I had a whole plan to discuss with scott extra nursing care because it has been so long since the two of us have been ever able to leave our house together and I am so exhausted from the cabin fever and the grueling regime of medical care for him.
The good news is that Jules did really well at OT today and is cleared for four bottles a day of three hours worth of food. So, this means we get to disconnect him from the feeding pump during the day! Yay! I am trying to focus on the positive and not direct any energy to my worries. Goodnight.
Joy

12.5 pounds!

Forgot to say that Jules is now 12 1/2 pounds!

And my friend Janine is walking for us in the march for dimes for babies. She wrote something really nice about Jules on her profile:

http://www.marchforbabies.org/personal_page.asp?w=21024601&u=BloomFamily

Joy

bottling

Jules is making good progress on his feeding. Keren moved him up to two and a half hours worth of food in each bottle. He is struggling today, doing two bottles of  an hour and a half worth's, plus one two hour bottle. But, even that is so much more than last week.

We are struggling feeling like we have cabin fever. Gigi keeps asking when we can go to a restaurant together(gigi joy and scott) and I feel so guilty that her world has been so narrowed by this experience. She can only be with one parent at a time outside of the house and that family time, she was so used to, is just gone.

Meanwhile, Jules is the most jolly happy little pumpkin. He is getting ready for a HUGE week with two occupational therapy appointments, one at-home physical therapy appointment, his high risk follow-up appointment to assess him developmentally at UW, and labs/pediatrician visit. 

Our surgical consult for G-tube is scheduled for May 22nd, I think. 

I am hoping he can get to bottle feeding during the day and just running the feeding pump at nights by the end of the next two weeks.

Joy

Synagis

After many complex negotiations, Jules got his last synagis shot protecting him from RSV today. He was very sad.

He missed out on his meds twice in the past twenty four hours, so appeared to have gained a pound since his last week visit to the doctor. We know it is fluid retention though and feel a bit worried. We are hoping tonight's dose of lasix makes it in.

We are grouchy and not so fun to be with.

Joy

Nice day!

Jules had pt/ot this morning with keren and worked on his feeding. He mostly wanted to play, but he still managed to do some good eating. 

He hung out enjoying the sunshine, kicking and smiling for a large portion of the day.

Gigi played with him tonight after dinner. she was really sweet bringing him toys and being very gentle.

Jules is hanging out between .1 and .2 on the oxygen, weighing in at 12 pounds, trying to drink two hours worth of food by bottle four times a day, and working hard to keep his ng tube in and not drive his parents crazy by making them insert it.

Joy

A good day

Jules managed not to vomit all day, which was a nice surprise.

He also had a big accomplishment -- he drank four bottles, each with about an ounce of thickened formula in them. It was the most he was ever able to take by bottle. I am trying not to get my hopes up that it might be possible to work up to a place where we can hurl our infinity feeding pump off the roof of kartik's building. But, it would be so nice if Jules could eat via bottles and not have that tube stuffed down his nose and back of his throat.

the pump is truly hell. staying on top of the entral feeding bags, switching out bags of formula and ice packs, and keeping it running and charged 24 hours a day is horrible. Not to mention the taping of jules face and the suffering he endures every time we have to remove the tape on his skin and re-tape, which is every third day or so. 

Jules had his first visit to the park today. he LOVED it. He saw a dog for the first time, felt wind on his bald little head, and watched gigi frolic all around.

Goodnight,

joy

Long day of medical appointments

With good news. Jules looks like he is doing better!

He is on .1 oxygen and they don't want to lower him further, instead we are going to "challenge" him with lots of eating. to see if we can get him eating more than one ounce at a time without harming his lungs. and maybe to avoid g tube surgery if at all possible.

We are moving to once every two weeks for lab tests.

He is 12 POUNDS! Putting himself at adjusted age in the twentieth percentile for weight, but still not officially on the charts for height. He is a tiny little guy.

And we are still just trying to take it day by day at home, trying to fit in all the medical upkeep, take care of gigi, and make dinner.  We are so lucky to have night nursing, because the days are pretty brutal in terms of his care. It really takes one person wholly dedicated to keeping him going at all times. We will be pretty excited to drop one of our machines. I might be a one woman parade when it happens.

Goodnight,

Joy

Week of medical stuff

Jules is mid-way through a long week of medical stuff. Monday, he had a VFSS (swallow study via live x-ray type thingy) and they were able to see that he was aspirating after lots of drinking of his bottle. So, we moved to a thickened formula for bottle feedings to help protect him from aspirating. He is now drinking a bottle with one ounce four times a day. So, a total of four ounces a day of drinking thickened stuff from a formula. He drinks the rest of his food, another 14 ounces of food via his ng tube.

Anyway, he also had physical therapy via boyer clinic where we learned that they think he is looking like a typical three and a half month old. They want to see what the University of Washington High Risk Infant Program discovers about him when they test and analyze him on April 29th for his four month corrected visit. We are going to work on motor skills and stuff with our at home physical therapist from Boyer each week.

tomorrow, he has pulmonary clinic where we will see how he is doing lung wise (he has dropped to .01 on his oxygen flow from .05 when we were discharged from the hospital) and we are hoping to come up with a plan to get him of oxygen. We will have those lovely weekly labs tomorrow, discuss his growth situation, and maybe plan out ideas for moving off of continuous feeding and maybe discuss the g tube surgery again.

Scott thinks he has found a way to rid us of our nemesis -- the medecine pump. If we give jules his anti-reflux vomiting meds in small doses before the rest of his meds, we can avoid massive vomits and give him his meds via syringe into his ng tube. We are on day three of experimenting with this and so far so good. This saves us time(45 mintues of infusion time) and also is more comfy for jules. We can't wait to get rid of one of his pieces of equipment. I am hoping this one gets the boot back to childrens home health care supplies and that the oxygen tanks are soon to follow.

Although, I have heard of babies lingering on .01 until their first birthday, so I'm not getting my hopes up.

Okay, here are some more pictures.

Love,

Joy

great week for jules

tough week for us.

Jules had a great week. he laughed on his six month technical age birthday (yesterday 4/10) and I caught it on camera. He laughed this weekend some more and it was so awesome. Scott will post the laughing soon.  I was getting really worried because Julian's corrected age is 3 1/2 months and I was wondering where his laughs were.

Scott, gigi, and I had a tough week. We moved on Monday to Kartik's condo because the dust at our construction site was too dangerous for Jules. Moving so quickly, combined with trying to do passover, and Gigi having no school, and trying to get to all of julian's doctor's appointments, was pretty intense. We are exhausted. We made many trips back and forth between the houses. There are boxes everywhere. thank you so much to kartik for letting us move in and live in his house during our remodel.

Luckily, gigi is sleeping over at meema and grampop's hotel (they came for passover) and scott and I are just taking care of Julian by ourselves. This is a good thing because he pulled his NG tube out tonight and it is a lot easier to handle re-insertion procedure without worrying about gigi.

We just got internet access a few minutes ago at kartik's condo, so this is our first attempt posting to the blog. I hope you all enjoy watching the video of julian laughing as much as we do. He doesn't have the lung capacity to laugh as long or as deeply as he might like, but he gets the job done.

This week, Julian has a swallow study on monday. This is where they watch on a live x-ray type thing called a flo-oscopy or something like that as he drinks from a bottle and they can see if he is aspirating. He also has physical therapy three times and a pediatrician visit as well as a whole day at pulmonary clinic. And gigi has no school. I am trying to figure out what to do to handle all of julian's appointments. should I bring gigi with us and have her watch him get shots and stuff? I don't know. My stress level is pretty high about it. 

Okay, goodnight.

Love,

Joy