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

rosh hashanah

We celebrated jewish new year and it was so wonderful. my dad, scott's parents, and scott's sister merrie came and helped us move into our newly remodeled home and celebrate the holiday.
It was so exciting to unpack and get into our house. We LOVE it.
Jules has been doing okay on his reduced lasix. But, with a pco2 of 53 today, we are unable to wean him off of it any further until he stables out a bit more. He weighed in this morning at 16 pounds 13 ounces and a gain of 12grams a day. It wasn't ideal for a weight gain for him, but it wasn't dangerously scary either.
We have about 20 boxes left to unpack and a bunch of little things to do to declare our house"done," but we are making lots of progress.
And right now, at this very minute, Jessica our fabulous babysitter is pretending that scott and I are out on a date and attempting to take care of Gigi and Jules at the same time. If it works, we may be able to start going on dates again!
I am hiding downstairs and pretending I'm not here in case jessica needs help.
I am close to hiring a caterer for the bris and I am getting excited to celebrate.
Joy
Joy

We are MOVING!

Tomorrow, 9/15!!!!!!!!!!!!11

YAY!

thank you

To everyone who sent the article in the new york times about PTSD in parents of preemies. It is a great article:

http://www.nytimes.com/2009/08/25/health/25trau.html?nl=health&emc=healthupdateema1

Dr. visit

Today was a great day for jules at the doctor.

He weighed in at 16 pounds 8 ounces. He had gained 15 grams a day for the past two weeks!!!! Let's hope he keeps that trend coming.

He had a pco2 of 39 on his reduced lasix dose, so we are cutting it in half again. No more night time lasix for him. We'll see how he does without it.

We tried taking him off oxygen today and that was not a success. Oh well.

In other unreported news:

1. Jules got his first tooth.

2. Jules started making D, B, and J sounds. There is still a concern about his speech, so he is having an audiology appointment 9/21 at childrens.

3. Gigi and Jules both have to get flu and swine flu vaccines when they arrive in two weeks.

4. Today was Gigi's first day of school and it was so great to get back into the school routine.

5. We are counting down the moments until we move back home next tuesday, 9/15. We spent a hot date night at Loews tonight and doing a walk through of our home.

Goodnight,

Joy

New pictures

Updates

Hi,

Jules had his eight month high risk infant follow-up appointment this week. It was somewhat intense.

The good news: The average range of scores for a baby on the test is 85-115.

At four months, jules scored a mild delay with one standard deviation below that when he scored in the low 80s for motor skills and intellectual aptitude.

At 8 months, he had done a little catch up and scored in the 90s as an average 8 month old. He was crawling and cruising around the test-taker's office and having a lot of fun trying to eat every test object she put in front of him.

The concerns from the visit centered around how he has fallen from the 10th to the 5th percentile on the weight growth chart, hasn't appeared on the length growth chart, and is freaking every medical person out by still being dependant on Lasix.

The part that was intense was when our evaluator, who happened to be his NICU physical therapist related how impressed she was with him, especially since he had nearly died.

I was QUITE taken aback and asked her what she meant.

She replied that hadn't I wondered what all the friction was about between our family and the doctors, that our situation was riddled with angst because no one knew what to do and he was dying. I said he wasn't dying, but maybe on the way to a tracheotomy. She said that when a baby is headed for lung and heart failure and they can do nothing more, than as a last resort they do an intubation.... but that is BECAUSE the baby is dying.

I started crying. She started crying. She told me that after working at the UW NICU for decades, most cases like ours did not end well. In fact, Jules did the best she has ever seen on her test for a baby born as growth restricted as he was at 29 weeks and/or who has lung disease.

Our visit ended with a painful discussion regarding the upcoming cold and flu season. She is very worried for us and implored me to keep jules away from all people, out of any type of baby music class, etc... and it ended on a strange note. From her perspective, Jules is fragile and sick with lung disease. From my perspective, he is struggling with a disability that I hope is temporary.

She pointed to the oxygen and the lasix and told me "Jules is sick." I left promising to be extra careful.

Joy

Updates

Hi,

Here are new pics!

Hello Again!

After a tough summer where I really struggled emotionally and processed a lot of what happened last year, I'm back and blogging again.

Today, I have just two things to report.

Firstly, Jules is doing very well. He is on a reduced amount of lasix, still lingering on oxygen, growing is going just okay, but he is a gross motor rock star. He is a super cute little buddy. More about this later.

Secondly, after the above mentioned emotional turmoil, I have realized how sad I am about Julian's birth and homecoming circumstances and ordeal. What I miss the most is that his birth was never celebrated. There was so much fear and worry overshadowing his arrival in the hospital and at our home.

So, in an attempt to heal just a little from that, we are going to welcome Jules with a bris celebration at home. Here are the details:

Julian's Bris/ Take 2

A bris without the snipping.

Sunday, October 18th at 10am

At our house in Seattle

Rabbi Borodin officiating

Please email me your address if you would like an invitation. I look forward to celebrating with all of you.

Love,

Joy

briefly back home again

we are having a heat wave here in seattle. It is 97 today and getting hotter tomorrow.

Did you know babies with lung disease can't breathe when it is over 90 and humid?

So, after a visit to the pediatrician's office this morning, we decided that living without air conditioning is too risky for Jules.

We left our quarters for the past four months for three nights in our previously renovated downstairs. I am having flashbacks of my c-section which was the last time I lived down here because I wasn't able to climb stairs.

Gigi is in one guest room. Jules/joy/scott in the other.

And we are handwashing a lot of bottles because our kitchenette does not have a dishwasher.

Here is the good news. It is 97 outside, but 72 in here. We can swaddle jules in blankets again! Yay!

Jules weighed in at 15 pounds 7 ounces today. Yay! He gained 17 grams a day again. Go Jules Go!

We are holding steady at a 30% reduced lasix dose and preparing for thursday, august 6th's big pulmonary clinic day where we will meet with the team of doctors, the nutritionist, nurses, and of course occupational therapist Keren to discuss julian's progress. Guess what is not on the table?

G-tube surgery! We are ALL so delighted not to be worried about that this week.

Goodnight from 36th avenue.

Joy

horrible night

Last night was the worst night we have had since jules stopped having night nurses.

Thank Goodness gigi was sleeping over at our hold house with miriam, bleys and nick.

Scott had to get up at 4:30am to make a flight to california. Jules refused to go to bed until 10pm and then woke up on and off until 3:30am when he chose to be wide awake and ready to party until six thirty AM! Scott kissed me goodbye and headed for the airport while I tried to coax Jules to sleep and freaked out because he kept pulling his oxygen prongs out and I couldn't tell if he was breathing or not. It was awful.

I am so exhausted and trying to come down from the anxiety with the oxygen. In my fatigue, I also kicked over the oxygen tank and freaked out. If the top snaps off, the tank turns into a torpedo and can break through the wall. I was wigging out imagining it ramming into the condo next door!

Jules also threw up his meds last night and this morning, so I am seriously worried about thursday mornings lab tests!

Joy

Nice day

Jules is having fun because his aunt Miriam, uncle Bleys, and cousin Nick are in town and spoiling him with lots of attention. He is loving Nick's guitar playing and having a great time.

We are watching him closely as he undergoes his first lasix weaning trial, down 30% for this week. He has labs on Thursday morning to check and see if removing the medicine has had an adverse impact on his lungs.

He is cute, cuddly, snuggly, and awesome.

Joy

Good News

Jules had a great day today.

Firstly, he slept a four hour stretch last night. It was SO nice for us.

Then, he went to see his new pediatrician. His previous doctor just left to do AIDS work in Tanzania.

His new doctor told us the following:

Jules has a head in the 40th percentile.

His weight is the 1oth.

His length is still 2ft. He is not on the growth chart and is even a little worse off then the last check-in.

However, since he gained 17 GRAMS a day for the past two weeks, we are out of G Tube stress land and can be pretty happy that Jules seems to have dodged that bullet! YAY YAY YAY!!!!!

Go Jules! He is so amazing.

If in the next year or so, jules does not make progress on length, he will go to a special endocrinologist to see what to do.

But, although most kids take two years to grow well, some kids take until they are as old as ten to make length progress.

She thought Jules was advanced in his motor skills for his corrected age. This is because he chose to move like a baboon on top of the examining table, resting on his palms and standing up on his legs in one of his crawling attempts. It was pretty cute and funny.

She thought he looked great and ventured to say we might just be out of the Scary Times.

She wants to run a weaning lasix trial next week with a blood test after seven days to see if he has major set backs.

And that's the story!

Joy

sleepless in seattle

last night he was up every twenty minutes from one forty until four am.

Rough Nites

This is the fourth night of no nursing care.

Our insurance policy finished the benefit just in time for the week heidi went on vacation.
So, Scott has taken the week off of work and we are trying to figure out what to do about the fact that Jules wakes up every two hours all night long. We are exhausted and struggling to figure out how to help him sleep through the night.

But, we can't let him cry when he wakes up because he just vomits when he cries and he needs the calories too much to risk losing food.

Our physical therapist had some ideas to try that we will attempt tonight, but we are so sleepy and quite foggy and absent minded during the day.

Goodnight,

Joy

Always on the fence

Jules is doing great in my opinion.

He gained 14.4 grams a day!

Our pediatrician thought that bought us merely another two weeks dodging the G tube surgery. The nutritionist thought it was awesome.

I feel strongly that since he is on an upward eating trajectory, we are out of the G tube woods. But, I'm ont the doctor.
Speaking of upward trajectories, two weeks ago, he was eating days of 500ccs. Last week, 600cc days were the norm. And he started out this week in the 700s!

Keren, are you reading this?? I know you are on vacation, but you might do a little dance if you read this. Drum roll please....

He just drank 800ccs!!!!! It is amazing. I know certain people will be shocked in a good way.

I was a little startled myself when I added up the numbers four times to make sure I wasn't crazy.

He is a super star!!!!!!!!!!!!!!!!!

Now, he could just turn all that eating into body mass and get up to 15grams a day so the doctors stopped being so freaked out and scaring me all the time, we would be sitting pretty.

But, I am very pleased about his progress.

On a final note, he is down to .1 liters of oxygen 24/7. I ONLY HAVE 1 MACHINE to take care of and he only has one set of tubes on his face. It is heaven!!

And only six medications.

Goodnight,

Joy

Amazing Eating

Jules has had two amazing days, pulling in 720 and then 760 today! I am so hopeful for tomorrow morning's pediatrician visit.

And he crawled backward this morning, which was pretty awesome in front of Kathy, his physical therapist through the State. He also clapped his hands for her, correctly held some one inch blocks, and did some cool sitting up, yet still playing with toys manoevers. Jules is doing really well and it is sooooooooooooooo nice to see.

Joy

good eating

Jules moved up a bottle size this weekend, doing his best eating yet.

At one sitting, he ate 150 ccs of food and regularly consumed 130.

Our car warned us three weekends in a row that it wasn't feeling well,

so it went to the mechanic all day saturday. Now it has new break pads,

rotors, a new coolant system, some new oily stuff, and feels a lot better.

We visited our house for the first time to see insulation and dry wall.

That was really nice and we are excited to be moving to the latter half

of the project and looking forward to moving back in the fall.

Jules has a big weigh in on wed. at the pediatrician. We hope he has been

holding on to his calories and gaining enough to keep that NG tube OUT!

I am even fantasizing about returning all the NG equipment. I really really

want to throw the NG pump backpack off the roof at Kartik's, but I

am containing myself.

Joy

doing well

Jules is eating his food goals, 7 bottles a day, one half hour each time, plus three solid food feedings. Just the bottles alone take us 3 1/2 hours of time each day!

But, we are very hopeful that he is growing. He will get a weigh -in next week.

Development wise, he is sitting up unassisted for long periods of time.

We LOVE having No NG tube. Love it. Love it. Love it.

Unfortunately, he is having a rough time with oxygen weaning and desats when he sleeps. So, he will be on oxygen for awhile.

Joy

endless GERD

Sometimes after hours of listening to Jules cough and rushing to snatch him up and hold him upright so he doesn't vomit, Scott and I get really grouchy.

Tonight was a LONG night of coughing, spit-ups, gagging, and reflux hell.

We just handed him over to our night nurse and are so grateful to be going to bed.

What are we going to do in July with no night nurses?

I shudder to think about it. He has been coughing over and over and over and over again and the doctors won't increase his antacid medication. It is hard to see him suffer and we are EXHAUSTED tonight.

So, we are going to sleep. My friend tylenol PM will hopefully help me sleep deep enough to not hear all that coughing in the next room.

joy

jules doing well

From Early June

We checked in with the pediatrician today and Jules is still gaining weight. he weighs in at 13 pounds 15oz today.

Today was good for us because it marked two weeks with NO ng tube. YAYYYYYY!!!!!!

And, today, Jules cleared the anemia of prematurity diagnosis and got to drop TWO medications. Now, he only has to take 6 or 7!

It sounds kind of silly, but it really makes a difference not having to measure out with syringes, those three old medications and since his food tastes a lot better without them, he doesn't vomit up his med bottles as much.

Jules has been off oxygen for an hour or two each day and is doing very well.

Here is what has been floating through my mind:

When I am at the grocery store (the one I go to is right by children's hospital), I wonder about the other people shopping. Are they wandering around with their grocery carts feeling hollow and lost, sick to their stomach and white knuckled, drifting through the aisles knowing they have to make dinner for their families, but struggling to even figure out what to shop for while their baby is in the ICU? Worried that right now as they shop, something is going wrong at the hospital and that they aren't there to help their child? I am haunted in my mind's eye by what it was like for me to just get by with life during that time and I look around, wondering who is in that kind of pain right now? I am so glad to be free of NICU jail and the hell of being trapped in the hospital for nearly six months. But, I am literally haunted by myself from that time. the ghost of me literally follows me around certain places.

When I hear people complaining about random stuff. It is just too soon for me to have any perspective. I am still too close to the trauma of our situation. I think about how grateful I am to be away from the fear in the hospital. I think about what it was like to spend every moment willing Jules to get better and to live and I just don't care about a lot of problems. Mine or anyone else's. I don't think I will ever care about some things the way I used to.

Jules laughing is the best thing in the whole world. Even though when I make him laugh, it gives him the hiccups and he often spits-up, I still can't help making him giggle. He is such a happy, jolly, little old man. He has this raspy almost old-smoker's voice from his lung disease and when he laughs, his whole body laughs. You can even see him smile when you stand behind him. He smiles so BIG that his ears stretch and you can tell he is grinning as you walk on up.

Joy

Great news!

Today was our day of reckoning at pulmonary clinic (where the team that followed him in the hospital from the pulmonologist, to the dietician, to keren from occupational therapy, etc...) came to evaluate Jules.

Here is what transpired:

1. On the subject of eating, Jules has been given the go-ahead to continue with full oral feeds and we are putting off the G tube surgery as well as re-inserting an NG tube if he can continue making the kind of progress he is doing. YAYYYYYYY!!!!

Right now, he is gaining 12grams a day and we are aiming for 15. Right now, he is eating about 600ccs of liquid formula a day and we are aiming for 630 as the next hurdle and then 700 so we can ditch the use of some noxious vitamins that make him hurl.

Today, Jules was 6.3 kilos which is about 13.9 pounds!

We were cautioned to not be too eager because kids like him could wake up and refuse to eat or regress and then it will be back to NG-city and G tube trajectory.

We are trying to get out of the upper-GI study and other studies necessary for the G tube surgery since most likely they would make us repeat them if we do the G tube surgery in september if things go poorly over the next few weeks.

2. On oxygen -- Jules went for 2.5 hours without oxygen today and still had blood saturation levels of above 92%. This is most excellent! It means we can begin to take him off oxygen for an hour a day, then two hours a day, etc... moving toward being off oxygen during the day time and just hooking him back up at night!

3. Social isolation.

We are still in enforced people restriction. For the summer, we can go to a restaurant with him if we like, but no day care or exposure to other children if possible and no passing the baby around to other adults, etc... Sigh. And this will get more strict in the fall when cold and flu season starts. It sounds like getting through our first winter is going to be quite the ordeal. We have been told to expect hospitalizations, etc.... Yay.

4. On scary medications. Jules is on about half of the lasix dose he was on when we left the hospital. The number one goal is to get him off lasix. That can happen after he gets off oxygen. So, for now, this one is tabled. And we will be checking his bone strength with a mineralization study as well as doing a hearing test to see if lasix is ruining either of those.

In conclusion:

This is what the pulmonologist wrote on his clinic visit, "Jules looks the best that I have seen him from a social and work of breathing standpoint and he had a great blood gas! Good weight gain!"

SO happy to have good news!

Joy

jules update

He is practicing sitting up unassisted, working hard to pull his knees under while on his tummy in preparation for crawling, and busy figuring out how to hold things with both hands and pass objects from one hand to another.

He is doing okay on his eating without an ng tube. We are highly concerned that while he is taking in the required calories, he is not gaining weight. We will find out thursday.

We scheduled his upper GI study and surgery preparationg assessments for the weeks following this eating challenge.

With scott's parents here to watch over gigi this weekend at their hotel and Gigi's babysitter watching Jules, we went out to celebrate our anniversary with a yummy dinner at Canlis and the first movie since November when the trauma therapist advised us to go to the movies to escape the NICU and we tried to watch James Bond but couldn't even concentrate and just kept calling the ICU for updates. It was really really nice. A glimpse at a normal life and we loved it.

Joy

jules news

Jules is doing a "cautionary week-long trial" to see if he can gain weight and eat his total food volume in calories through a bottle with no night time assistance from his feeding pump/ng tube.

He seems to be doing okay with eating the volumes required of him, but we aren't sure if the exercise of eating all those bottles is burning the calories at too rapid a clip. He may not gain weight after all.

We are trying not to get our hopes up too high and have remained on course, visiting with the surgeon yesterday and scheduling a G tube surgery for Jules. In order to have surgery, he has to have a special GI study and be approved for sedation by the same doctors who freaked out last time. So, I am not quire invested in the entire thing.

In the meantime, he looks adorable without the NG tube and is a lot easier to handle without fear of pulling it out all the time. He is more comfortable and so are we!

Here's to hoping he gains weight at the end of the week!

Joy

3 for 3

So, three weekends ago Gigi and Jules were sick. Then, last weekend I had strep throat and this weekend, it was Scott. Scott got strep and had to miss work on friday and we Silvers stretched to get through the days. And now, Scott is feeling better, I feel better, and Gigi and Jules are okay. We are hoping to catch a break and find boring, peaceful weeks ahead.

I am imagining tedious doctor appointments where they shake their heads and wonder if jules and I should bother coming back as often because he is doing so well.... And weekends where no one is sick and we can actually relax and unwind. Maybe, just maybe I will have enough rest and time to speak on the phone to a friend or family member! It would be so nice. So, that is what I am hoping for.

Scott's parents are coming next weekend to help out and will take Gigi to their hotel for a sleepover. We have hired Gigi's babysitter to guard Jules while we attempt our second date night in many months. It happens to be our seven year wedding annivesary and our fifteenth anniversary of being together on June 2nd and we are looking forward to getting out of this cabin fever situation. We aren't quite ready to celebrate, things with Jules and us this year have left us perhaps a bit too shell shocked and weary for that, but just to get out of the house and be together and at the very least appreciate that however awful this year has been and the damage it has done to us as individuals, it has only strengthened our marriage. And for that I am very grateful.

Goodnight,

Joy

Memorial Day Pictures

On the mend

I am starting to feel better from the antibiotics. My throat is in less pain, my fever is down, and I got up and about for a few hours.

Gigi feels right as rain and her anti-bacterial ointment for her face is doing the trick.

Jules feels a lot better from his cold, with just residual conjestion and coughing.

I think the Silvers are on the mend!

Scott took care of both children from 5:30 last night until about that time today when our friends Irene and Tal offered to take Gigi for a sleepover (Thank you Thank you thank you!). He told me that he needs me to get better soon and is not prepared to be a single dad. It was a pretty tough day for scott.

Joy

I have strep throat

on tylenlol every four hours, my fever is 102.7.

I have the shivers and feel like I can't swallow. I started the antibiotics this afternoon.

Joy

fever climbing

My fever is now 102 on tylenlol and my throat feels so swollen and hurts so much that swallowing is excrutiating. I have left a voicemail for my doctor and will call again when her practice opens at 9am to see if anything can be done to help me get better or be more comfortable while my body tries to fight this off. 

Joy

more fever

So, I'm sick. Right now, I'm sporting 101 fever and feel awful. I caught Gigi's illness. First I was freezing, then boiling hot, and now my throat is so sore that I can't bear to swallow.

Gigi finished her fever, but developed some sort of bacterial rash that required $75 ointment to conquer the infection.

Last night was terrible, Jules coughed for hours and hours on end and gagged so hard, his NG tube came out part-way. I didn't sleep a wink. The nurse came to get us at two am for help with Jules.

Our house looks like a cyclone hit it.

Scott had to leave work early to take gigi to the doctor for her rash because they wouldn't let me go to the pediatrics clinic with a fever and sore throat. Plus, I can't approach or touch jules, because it is too risky for him to get this.

So, scott is a single dad right now taking care of three sick family members and I'm tearing up as I type this because it just feels like too much. I know this is just life, but it feels so cruel not to be able to hold Jules and I just feel run-over. I feel guilty because my RA drugs make me immunosuppressed and when I don't get sleep for nights on end, it shouldn't surprise me that I caught Gigi's fever illness.

Back to bed.

Joy

good labs

Three sets of great labs! Best pco2 ever posted  -- a 36! Also recorded a 39 and 40 and all when he is enduring a cold. Maybe he is finally turning a corner with the lungs? We dearly hope so.

Gigi's fever ended monday morning, but she is still not quite up-to-snuff apparently.

Jules is wheezy and plodding along on prednisone and albuterol inhalations. He is vomiting only about four times a day instead of eleven, so we are  finally getting some sleep and back to only two loads of laundry a day instead of our high point of the weekend - SIX!

Also,this morning jules took his meds via his bottle instead of the NG tube for the first time. It was very exciting.

Joy

Hard weekend

Gigi still has a fever. the third full day of fever. If it is here in the morning, I am taking her to the doctor.

Jules has a cold and we are hovering over him, checking his temperature, checking his oxygen levels, watching and waiting. He threw up about eleven times today.

Keeping a sick gigi and jules content was impossible and the best we can say about today is that we survived it.

Goodnight,

Joy

Al Bundy Moment and some May Photos

From Beginning of May 2009

From Mother's Day 2009

From For a moment, nothing on Julian's face

Without a tube for a moment...

Last week, before his ng tube got pulled out twice on Friday, we changed his tube from his right side to his left side. Since he gets most of his food by bottle during the day we took the opportunity to get a few pictures without his equipment...

Rough night

So, we discovered gigi had a fever of 101 at six last night. We gave her tylenol and she started to feel better. Then, things went down hill. At eight, Gigi stepped on Julian's NG tube and it came out. Jules cried because it yanked the tape on his face.  He was very sad. very very sad.

When we tried to re-insert the NG tube, it did not go well. Jules started to bleed in his nose, vomited several times, and he choked during the insertion process and the tube went through his nose and out his mouth. Scott and I were both shaky and exhausted. I cried two times watching Jules suffer and scott only yelled at me once. It was quite nerve racking. 

Finally, we got Gigi to bed and Jules was asleep with a new NG tube. It was ten o'clock and we thought we could finally collapse in bed. We were wrong.

At eleven, Our night nurse accidentally pulled Julian's NG tube out AGAIN! We struggled to get it back in, scratching the back of his throat and causing more nose bleeding and much vomiting. On the fourth try, it finally went back in. 

At twelve thirty, Gigi woke up crying with her fever back. By the time we gave her more tylenol and made sure Jules okay, it was one in the morning and we had each changed shirts twice from the vomit and blood, our room was destroyed, and we were completely depleted. 

I stared at the ceiling bug-eyed on adrenaline and fell asleep around two in the morning.

Jules has been coughing a lot ever since and we are worried that we really hurt his throat with the NG tube.

Gigi has had a fever all day.

We are so wiped out.

Joy

clarification

We aren't sure which labs are to be believed. Jules is back home doing great and had his best eating day yet yesterday. The pulmonologists want to change his diuretic dose, but scott is unconvinced about that. Scott is waiting to hear back from the pulmonary team to discuss the issue. We are so pleased with his last labs and are going to repeat them weekly again for a while.
Joy

Bad labs

My morning was an emotional rollercoaster. Julian's labs were bad from monday. pco2 of 62. the pulmonary team called to tell me they were worried and were trying to figure out what to do.

I took jules to our pediatrician. He admitted us to the pediatric intensive cafe unit at swedish hospital for more testing. The new numbers were better, pco2 of 50. The pulmonary team called to tell us they wanted to switch julian's meds around, but we aren't really sure what to do. I will write more later.

Joy

Fever

Jules has a little fever of about 99.8 since last night at midnight. 

Mother's Day

I had a great day.
Scott and Gigi made me my favorite breakfast and scott took both Gigi and Jules to the park. I enjoyed an hour all by myself in our old house and it was SO nice.

This year, being a mother has been a seriously intense job, but so rewarding. I just took a video of Julian cracking himself up as he slept and had a dream about something that made him giggle. It was SO adorable. Hopefully, Scott will post it tomorrow.

Gigi and I went to the Fancy Nancy book tour yesterday with a friend from her school and she loved it. We also went to the welcome to new families party at her new school and that was very fun as well.

So, a great weekend actually.

Joy

13 pounds!

Jules is thirteen pounds! This is great because this weigh-in came after his first week off the pump during the day. Just breaking even and not having weight loss would have been nice, but a little weight gain for him is really great.

Scott and I went on our first date since July 2008 where we didn't have the ominous fear of a known doomed pregnancy, the stress of my bed rest and personal hospitalization, the four months in the NICU, and the rest of Julian's prolonged hospitalization hanging over us. 

We were a bit nervous to leave him behind for the first time and kept our cell phones on the table, but my mom had Gigi for a sleepover at our old house and Jessica, Gigi's babysitter was up for watching Jules after we put him to bed. He slept the whole time we were at dinner and we had such a nice time. It was wonderful.

Joy

Finally Napping!

Jules is finally napping. Heidi has taken Gigi to ballet class and I can finally write about the testing.

I thought it was fair and accurate, but still hard to hear.

They said they weren't surprised given his prolonged hospitalization, his malnourished state of birth, the 29th week birthday, his inability to feed, and his chronic lung disease that he did not do any better than that.

They were hopeful that when we go for his eigth month exam, that he would be eating well. That made me feel encouraged. It is weird to be so excited for him to be able to do what every typical newborn could do at birth, but I would be delighted just to have him able to eat well.

They said that right now his brain is still taking all the food. When he was born, his head was in the .1 percentile. When the UW NICU discharged him to children's hospital, his head had grown to the 20th percentile, and now he is in the 50th to 75th percentile for head.

This is good except his lungs won't get better until he grows in length. And he was not born in any percentile of length and has not grown to be on any growth chart.  He is like a giant lollipop with a tiny body and huge head.

His weight has gone from .1  to 10th percentile. 

He was able to do some things a baby who was four months old would be able to do, like roll to each side, sit up supported around the waist for ten seconds, smile and talk to the examiner, hold a toy with two hands, etc...

He was not able to hold his head at a ninety degree angle when on his tummy, more like a 45 degree angle. He was not able to reach for a dangling red ring. He  held his head in alignment with his body when they tilted him to each side, rather than correcting himself to hold his head perpindicular to the floor. 

The tester was our lovely first physical therapist, Jan. Seeing her was so nice for me. It felt like how I would imagine seeing a war buddy. I had gone through such hellish NICU days with her, laying my worst fears on the line. She had held my hand and hugged me through some dark times and here I was, seeing her under such different circumstances.  

She was so happy to see how far Jules had come, astounded to hear of lasix helping him the way it did, so pleased that he did not end up with a tracheostomy or intubated, and really thrilled that he was drinking bottles during the day.

I am still unsure how I feel about the assessment. I wish I could say I was happy that he scored only a month behind his adjusted age.  But, that would not be true. Of course I wished he would be okay, be reaching the milestones appropriate for his adjusted age, etc... but, I also wish he weren't sick at all, could breathe without extra oxygen support, wouldn't need nine meds twice a day, etc.... So, wishing is pretty useless to me at this point.

I tried to get them to say he would be okay. that I knew a friend whose baby had scored as a newborn on this four month test, but was okay now. In the nicest way they said she wasn't the same. That his prolonged hospitalization, the severity of his lung disease, and his inability to eat made him different. Not to take hope from that case, because Jules was in a different spot. 

Bottom line, they don't know. They don't see this test as any predictor of him or his potential. But that they didn't see anything abnormal and they would have us continue as we were, with the physical and occupational therapy we have, etc....

Okay, I have to get ready for shabbat.

Joy

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

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

10 pounds!

lWe took our first trip in the car today since coming home. To the pediatrician and then back home. Jules was ten pounds on the pediatrician scale and we survived trying to carry jules, the stroller, the car seat, the care notebook, the oxygen tank, and the feeding back pack. It took two of us, a disabled parking spot, and some deep breathing... but we made it!
Jules has his first physical and occupational therapy appointment at home on Monday, another trip to the pediatrician next wednesday, and a bunch of other appointments, so hopefully it will get easier with practice.

Day 3 at Home

Jules is settling it at home. He's still smiley and happy. He's been spitting up a bunch so that's something to work on. We're trying to work through the details of a routine. There are lots of complexities.

For example, he gets 9 medicines 2 times a day. That's 9 different medicines each drawn up individually into a syringe. Then infused via pump through his NG tube.

Jules is Home!

From Going Home Day

It is so wonderful to have him here.

We are so very happy and filled with euphoria.

We had our first family dinner, we gave him his meds for the first time, mixed his special food for the first time, took care of his feeding tube and oxygen for the first time, and my favorite -- CHANGED his ng tube out after just a few hours home. Scott did the procedure and we survived.

But, we only managed two binky trainings and skipped his bath. Our nurse is here now and we are going to bed satisfied and exhausted.

Goodnight,

Joy

P.S. For camparison here's Gigi (a lot younger than Jules)

Jules coming home tomorrow!

We have cleaned out his hospital room and brought all our stuff back home.

We built the crib.

We have a meeting tomorrow morning with the oxygen supply company, a training on how to use the feeding pump and medicine infusion pump, and a lesson on how to mix his special food scheduled.

We are targeting noon for departure/break out of hospital jail time.

I didn't sleep last night because I was so excited and nervous. I CAN'T WAIT to bring him home!

Joy

update

Hi,

I didn't have a lot of time to write last night and explain fully what happened.

But, basically the pulmonary team added Jules to the surgery schedule yesterday and they believe that the surgical team should have read julian's chart and come to our room to consult for the surgery. The surgical team believes the pulmonary team should have consulted with them before signing jules up for the surgery because they would never have signed off on doing the procedure in a baby as small as julian who is still on oxygen. 

So, the surgeons were surprised to read over his chart at three after he had been kept on no food all day and had an IV put in, that he was on a half a liter of oxygen and had the lung disease he has, but was supposed to get the surgery. They didn't want to intubate and extubate a baby with his kind of lung disease.

They told us that if he were their baby, they would not do the surgery.

The surgeon went to get some of the tubing they would use on Jules and showed it to us to try and scare us away from the procedure.

It was not a fun afternoon. Everyone was upset that Jules who needs every calorie he can get, had been starved all day needlessly. The doctors were somewhat embarassed about what had happened and all blamed each other a bit. 

And now we can't get home till Monday. And our house is super depressing with an empty crib waiting for Jules and no cute little pumpkin around here.

Joy

left hand meet right hand

Yesterday was an incredibly frustrating day. The net result is that we will wait a few months for Jules to have his g-tube and he will have to stay until Monday to be discharged. All this because Jules was *never* a good candidate for a g-tube surgery but his attending pulmonogist and the GI docs in charge of the surgery never bothered to talk to anasthesiology or surgery until 10 minutes before his now aborted surgery. A simple conversation AT ANY TIME in the last 2 weeks would have avoided all of this nonsense.

This will give you insight into why hospitals suck. Why we waste money on keeping kids in hosptials. Why simple project management and FOR HEAVENS SAKE there should be FREAKING check-list for EVERY surgery.

• Wednesday 2/25 3pm "Discharge Planning Meeting": I say "put on your thinking caps what else needs to be on the discharge list". Complete blank stares from the nurses and doctors around the room. Pulmonologist DoctorA humors me and goes through body systems. List now has 10 items. (NB: No swallow study, no g-tube on list). Date of discharge Thurday 3/5.
• Tuesday 3/2 7:30pm: Pulmonologist DoctorB says to me have you thought about a g-tube. He's going to need it at six months with 3/4 probability. I ask him about the risk of the surgery, especially about the risk of anesthesia and the fact that he'd have to be intubated. There'd be risk that he couldn't be extubated (take tube out for breathing)
• Wednesday 3/3 10am: Equipment to go home like O2 starts arriving. Trainers come to teach us how to use it.
• Wednesday 3/3 12:30pm: Joy and I talk it through and decide to get the g-tube. All home preparations are put on hold.
  
• Thursday 3/4 9:00am: Nurse calls to tell me that we're on for today for g-tube surgery.
• Thursday 3/4 9:30am: GI Fellow (typical initial g-tube is a PEG inserted with the aid of a scope down Julian's throat, so GI takes the lead) visits and says Jules is a good candidate, he's over 4kg. I ask if there are any anasthesia concerns and when would anasthesia come to see us.
• Thursday 3/4 9:45am: Jules is NPO -- no food. And has to be that way for 6 hours. Actually the GI fellow said 4 hours, but she was wrong it was actually 6 hours, per anasthesia.
• Thursday 3/4 3:00pm: We carry Jules up to the pre-op room.
• Thursday 3/4 3:30pm: GI docs visit again to check on os.
• Thursday 3/4 4:00pm: Anasthesiologist comes in after 30 minutes of reviewing chart. Asks questions that should be in the chart (like the fact that his RVH was resolved). Then says we have 3 choices: wait for surgery for 2+ months, extubate in PICU (equivalent of NICU for older kids), or extubate immediately. I told her to talk to Pulmonologist DoctorB. She pages and waits.
• Thursday 3/4 4:10pm: Overheard in the hallway (the surgeon to Anasthesiologist) "Are we doing this or not?"
• Thursday 3/4 4:45: Joy and I call neonatologist friend to ask advice.
• Thursday 3/4 4:50: Surgeon comes in and says a) he wouldn't do the surgery and b) shows os the "belly hose" that is much bigger than his "nose hose"
• Thursday 3/4 5:00: Anasthesiologist and Pulmonogist Doctor B chat.
• Thursday 3/4 5:10: Joy and I call off the surgery.
• Thursday 3/4 5:45: Jules gets some food again.

No surgery

Horrible day.

The surgeon freaked out and said he did not want to do the surgery. The anesthesiologist freaked out and said she didn't want to put Jules under.

Jules went without food for eight hours and had to live through the pain of an useless IV.  I got really mad and then cried four times.

We are now trying to get home on Monday.

Joy

Surgery Today!

We just got the call. This afternoon is the plan for Julian's surgery.

We are praying everything goes well and the little guy comes through it with no reaction to going under.

Joy

long day

Jules recovered from his circumcision (slept a lot) and we tried to recover from our disappointment in not bringing him home and prepare for his upcoming surgery.

We don't have a surgery date yet, but started the ball rolling.

Goodnight,

Joy

Brit Milah: Highs and Lows

From Bris and Other Stuff

Highs:

Jules had his bris and came through it like a champ. Thank you to our mohel, Dr. Loren who did a fantastic job facilitating the procedure, managing Julian's pain with morphine and a nerve block, and getting both Jules and me (the mom) through it with minimal suffering.

Lows:

We have been preparing to bring Jules home on Thursday.

Unfortunately, the swallow study he went through today showed micro-aspirations when he tried to drink from a bottle. The doctors believe he needs surgery for a Gastric tube, or a "g" tube as they call it, which would delay his home coming significantly.

Scott and I are so sad about this and it was a rough day coming from the happiness of finally experiencing the significant occassion of Julian's bris to the blindside of another few weeks of hospitalization, including a surgery for Jules. We are falling into bed, feeling a bit defeated, but still happy from celebrating the simcha of his bris.

Joy

Good day

Jules had a great day!

He passed his car seat challenge.

He had a blood gas of 54.

He had the results of a cranial ultrasound showing improvement in his brain asymmetry, so that he is now within normal limits.

He had a chest x-ray, but no results yet.

He moved up from 10ccs to 15ccs on binky training.

And he smiled his way through the morning.

They also found some unusual stuff in his blood work and have called for a hematology consult. They don't seem overly worried about it though.

Tomorrow night is his bris and he is blissfully unaware.

Joy

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