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

From Jules First 2 Weeks At Home

From Gigi Dance Recital and Jules at Home Weeks 1 and 2

From Gigi Dance Recital and Jules at Home Weeks 1 and 2

Bottle feeding

Jules did well in his bottle feeding observation today. It was so exciting. He loved it and swallowed well.

Goodnight,

Joy

taking care of jules

Tomorrow, I am taking Jules back to Keren at Children's and she is going to do her first bottle feeding experiment with him. I am SO excited! Even though he won't be ready to do bottle feedings with us until he passes his swallow study in mid april, it is a big moment for him to try with PT professional extrodaneire - Keren and see what he can do.

A lot of people have asked me what the schedule is like in terms of taking care of Jules. Here is a rough outline.

10pm-6am nurse on shift

6am: scott takes over from nurse, preps meds (takes a long time to individually draw out nine medications into syringes and prepare everything) and makes Julian's special food. He also switches out the ice packs in the feeding pump backpack and makes sure there is enough food.

I wake up with Gigi and get her ready for school and take her to school at eight fifteen.

8am: scott begins the 45 minute medical infusion of meds and heidi arrives to take care of Jules. when the pump finishes, heidi flushes out the line. Both heidi and scott try to fit in binky trainings if at all possible.

During the day, Heidi keeps Julian comfortable with all normal baby stuff, like changing diapers, etc... but also, she checks to see if he is saturating with enough oxygen on the monitor, refills the oxygen tanks if necessary, and keeps those binky trainings coming.

Heidi and I take Jules to the doctor for at least one appointment a week, the lab for an appointment a week, we will  stay home for PT/OT stuff up to a few times a week, and I try to remember to order medical supplies, stay on top of all his appointments, and tomorrow I need to refill all his prescriptions.

Heidi does his Meds at 2pm.

I leave to pick gigi up a bit after three and come home at 4pm with Gigi and take over from Heidi. I watch Julian and Gigi until Scott gets home for dinner. I try to binky train, diaper change, and play with him with Gigi as my helper.

After dinner, we give Julian and Gigi baths and I take care of Jules while Scott puts Gigi to bed.  We administer Julian's meds again at 8pm and make more formula if necessary. We try to put more food in the pump for the nurses, make more food if we need to, and switch out the ice packs again. The six to nine o'clock stretch is the most difficult for us.

And at ten our nurse returns and we fall into bed.

And on that note, I am off to bed! Goodnight, Joy

merrie's wedding

We (gigi, joy, scott) traveled to philadelphia for merrie's wedding this weekend. It was an agonizing decision, but we did it and we had a wonderful time.

In order to accomplish getting there, we came up with a plan to take care of Jules in our absence. We were particularly nervous given the preceding week's readmittance to the hospital, but we forged ahead thanks to our confidence in our home team:

Aunt Wendy - who drove eight hours from Oregon to stay in our house from thursday to sunday.

Heidi - Our fabulous nanny and expert on Julian's medical care who also moved into our house.

Deb and Susan - Our night nurses who picked up extra shifts to give Wendy and Heidi breaks

Dr. Emily - a lovely doctor who cared for Jules in both the UW and Childrens NICU and assisted with his bris, who came to visit Jules twice at home old fashioned house call style.

Keren, AKA Baby whisperer PT/OT from Children's who dropped in to visit.

Irene, who took the all day Sunday shift and who provided snacks and meals to heidi and wendy to make the weekend work well.

Thank you to everyone! Being able to attend Merrie's wedding was the greatest gift you could have given us and it was so very nice to have fun and celebrate such a meaningful and fabulous event. We came home to a healthier Jules and a tidier house than when we left. We were so excited to have made it to merrie's wedding and so glad you all made it possible for us to go.

Julian updates:

Today was his evaluation developmentally from the boyer clinic. Even though I knew he would be behind, it was hard for me to hear that he is at the two month level for communication and motor skills and something called adaptive skills. He qualifies for at home PT/OT and we are waiting to hear more about that. His emotional/social and cognitive levels were on par with a typical 4/5 month old.

Thank you again to everyone who made it possible for us to attend scott's sister's wedding. We danced all night and Gigi was an amazing flower girl. Lots of love to you all, Joy

Home Again!!!

We are SO happy!

on the mend

Jules is getting better!

He is breathing more comfortably and his cough is going away. He is more interactive and they think he will go home tomorrow. He has the croupe or some other upper respiratory viral infection and has responded to all the medications they gave him. They said they gave him a whallop of steroids to help stave off bugs.

Yey!

Joy

Readmitted

Julian is being readmitted right now to childrens. I am blogging from the er admit room. We are waiting for a bed.
They are worried about his massive work of breathing. he has a croupe type cough, severe subcostal retractions in his chest, and is wheezing and suffering while he breathes.
What is good is his pco2 is 47 and he tested negative for the first lab for RSV.
what is bad is how he looks, how he sounds, and his scary retractions and the noise he is making as he tries to suck in air. they are treating him with epiniphrine and dexamethasone and trying to keep it coming so that we can hopefully treat him just with meds and not have to talk about more serious interventions.
we are scared and sad to be back in the hospital. thank you to irene and tal and hannah who are hosting gigi all day. Lei is fetching us food so we don't have to eat at the hospital and we are putting one foot in front of the other. The residents just told us that we look exhausted and terrible and need to get more sleep. I am surprised scott didn't give him one of those lethal darting looks.
Poor jules.
Joy

Jules has a fever

It was 100.3, but with tylenol is 99.5

He has thrown up nine times today and been very irritable.

We spoke with the pulmonary attending and came up with a plan. He is on 1/2 a dose of lasix, faster food to fight dehydration, and less caloric food to not upset his tummy.

Lei fetched us many a meal, Jen cooked us many a meal, and we had a nice first shabbat home with julian before he got sick. We are exhausted and falling into bed with the nurse here on deck with Jules. She is going to wake us up if he throws up, doesn't have wet diapers, and or is fever spikes.

Joy