112 days

Pco2 of 57
happy little guy snoozing away and growing
Gigi and I are all packed and ready for disneyland. Scott is looking forward to hanging out with Jules all weekend.
Goodnight,
Joy

111 days today!

111 days in the NICU, but the last 9 have been 9 Good days in a Row!

Pco2 of 53. Wacky electrolytes addressed with adding in more chloride.

Going down to 1 1/4 liters of flow tomorrow morning to watch through the weekend.

He looks great and had a great Physical Therapy workout this morning and is up to twice a day pacifier dipped in milk snacking sessions as he builds up to "binky training," next week, where PT/OT uses a pacifier with a syringe behind it to control a small amount of fluid and study him as he practices eating and swallowing.

He slept on me all day except when he woke up and stared intently into my eyes and at my face for forty minutes.

Based on the suggestion of the trauma therapist, I am taking Gigi for a special surprise visit to Disneyland on Saturday so that she gets some of my undivided mommy attention time. She is dreaming of meeting Cinderella and wondered today if she could hunt for buried sparkling jewels at Disneyland or whether Pinkalicious from her favorite book lived there.

Goodnight,
Joy

new pictures

new pictures

Week 15 Julian

7 1/2 pounds!

PC02 (carbon dioxide) = 55 (good)
electrolytes looking worse.

They tried to wean his flow down from 1.5 to 1 liters. Scott and I complained and worried and they put it back to 1.5 when we came in for Julian's bath tonight.

He weighs 7.5 pounds!
His head is 36-37 centimeters.
His length is 48 centimeters.

He is a snuggly little guy.
Joy

stable

No change today. No numbers because they decided to only do labs on M/Th.
However he might be looking puffy. We've asked that we continue to be daily labs.

morning stability

CO2 stable at 56
Lost 35g (good based on 200g+ weight gain yesterday)
No changes today.

Good day #5

We woke up early this morning so Scott and Gigi could go to ski school. The hospital told us Jules is having good numbers for the 5th day in a row!
PcO2 of 52!
He is SEVEN pounds!
Yey!
Joy

she means crunking under pressure.

must be the tequila talking.

cracking under pressure

I'm sure you can tell from my husband's last post that we are cracking under the pressure over here. Date night in the NICU leaves something to be desired. We are exhausted from the week at the hospital and feel lucky to be going to sleep at 9pm! But, four good days from Jules means we will sleep better than we have in awhile. Goodnight. Joy
P.S. Jules says Happy Birthday Grandaddy!

NICU Crunking

Missing out on all the clubbing we were doing this year was really starting to hurt. So we decided to bring the club to the NICU. I hizopped on the Children's Hospital WiFi and grabbed the latest TI album for my iPhone. Then we cranked the volume up to 10, popped the Alize and just got crunking. Next, we got ourselves a bottle of tequila and drank shots for every pulse ox monitor chirp. Julian got into it too -- especially after we changed his food recipe from 1:1 (breast milk:formula) to 1:1:1 (breast milk:formula:vodka). Imagine what vodka does after passing through the n-d tube - straight into the duodenum. Finally all crunked out Joy and I passed out - she under the breast pump and I under the crib, tangled up with the blood pressure measuring tube.

Also Julian's CO2 and electrolytes were stable today and he weighs just over 7 pounds. But who knows what all that crunking will do?

looking stable

CO2 at 54 (yesterday was 50). Other electrolytes are more or less unchanged. There's some natural variability in these numbers and today's measurements seem to be with in that.

Shabbat Shalom.

a good day

Jules had a good day. He's getting rid of carbon dioxide well and his electrolytes are starting to look more normal.

The working plan is:

-"do nothing" for the next few days.
- wean from 2.0L to 0.5L after that
- move to "the floor" (not the intensive care unit)

All this, supposedly achievable in the next week or so.

better numbers

CO2 down to 50 (54 yesterday) and corresponding electrolytes down. Maybe the beginnings of good day.

??????

We have no idea what is going on.

Jules co2 was 54 today?
They weren't even sure they believed the test and were skeptical about that number. His electrolyte numbers were slightly better too.
They realized he had stopped growing well and adjusted his caloric intake.
They told us we could avoid CPAP today and that they would decide again based on the numbers tomorrow.

We feel completely turned upside down and have no idea what to plan for or expect. History shows us that after a day of good numbers, the day that comes next is a doozy. And even though I know that and don't want to feel my hopes dashed again, I still can't stop myself from hoping that things will turn around and that maybe tomorrow will be the day he stabilizes and starts a trend toward getting better.

Joy

step back

Unfortunately his Co2 is back in the high 60s. This means that, despite our fervent hopes, he'll likely be going on CPAP tomorrow. For a 4 week old baby this is really going to suck.

Jules comes through

Again! thank you so much for all the calls and emails last night and comments on the blog as well. Knowing you are thinking about us/him, praying for Jules, pulling for us, and directing positive energy toward the little guy, gives us comfort.
This morning, Jules suprised the doctor with:
1. A carbon dioxide of 59! Woo Hoo!
2. Electrolytes: Chloride down, Bi-carb down, and okay potassium.
This means that we don't have to move to CPAP today! Yey! We are so thrilled.
They are hoping that the decreased lasix dose with the increased meds to work on his electrolytes will continue to work. If so, this will prove the theory that if they can balance his electrolytes, his carbon dioxide levels will go down. they won't be normal in the low forties, but they might reach normal for a baby with severe lung disease, which would be in the low fifties.
So, today is a good day for Jules And since we now know the ups and downs of this, we are going to celebrate a good day and not try to think beyond that.
Love, Joy
PS. His head grew to 37 cm.

tough day

Well, last night, we went out to celebrate yesterday's good day for Julian with a dinner out and this morning we woke up to hear that his electrolyte imbalance is quite bad and that CPAP is back on the table for Monday morning. They cut his lasix dose in half and increased his Diamax and added in a third med to thelp with his imbalance. But, if it doesn't work and his body is still so out ot wack tomorrow morning, then CPAP is our only choice.
CPAP means a step backward that is pretty tough as parents to hear. He hasn't been on it since he was born. It is a helmet type device strapped over his nose that forces air through. Most babies don't like it and require some form of sedation to keep them comfortable.
It isn't as scary as re-intubating him like they considered doing last monday, but it is a pretty big change in his life and one that comes with consequences that are painful for us to consider, especially as they relate to his being much restricted with his ability to interact with the world and with us and of course, CPAP keeps him from developing his oral skills and other important developmental steps.
We are so exhausted from the going forward and back with Jules. We are so hopeful one day and so discouraged the next, that it hard to have any clear vision for how things are going.
We go to sleep tonight very stressed and exhausted, trying to stay positive and putting on a brave front for Gigi.
Joy

100 days

Today is the 100th day in the hospital.
Last night was the start of Julian's 15th shabbat.

At this point, Julian has met probably about 100 different nurses and I wonder if he has any idea who his mother is.

Joy

Hanging in there

Even with the steroids his Carbon dioxide levels are stuck in the 60s when they want to see 40s. But, his work of breathing (how hard he has to work to suck in air and seen with big chest retractions,) looks better today. His electrolytes are off and they have added a medication to try to address that. It didn't work yesterday, so they increased the dose today.

Scott is at the hospital holding him now.

Joy

Diagnosing

Last night, the pediatric ENT team scoped Julian's throat and upper airway to see if they could find anything causing a "stridor", not sure how to spell that one. They didn't find anything.

He lost 100 grams of weight on the lasix, which made me feel really good that his body is getting rid of all that excess water that makes it hard for him to breathe.

Joy

6 1/2 pounds!

Jules is six and a half pounds now. He had a good day because it was nice and quiet. He just slept and cuddled. 

He is now 47 centimeters in length.

And for anyone who knows how to make a hat -- 35 centimeters around his head.

Scott's computer has been broken for a week, but as soon as the part comes in that he ordered, he will fix it and post some new pictures.

Finally, thank you to Louise. Today, Jules received a box at the hospital. We didn't even know he could receive mail and packages at Children's Hospital. We have never met Louise. She works with scott's sister Merrie in New York. She has been following the blog and occasionally posting encouraging words even though we have never met her. And tonight, we opened a box of presents from her to Jules. So, thank you Louise. That was a truly unexpected and delightful surprise. Jules went to sleep listening to his singing octopus.

Good night,

Joy

going to bed happy

After a terrifying two days, I am falling into bed happy tonight.

It was better than we could have even hoped for to see that Julian's heart was not only not enlarged further, not the same, but actually IMPROVED! Thank you for all your prayers and positive energy and love.

Jules had a special bone mineralization test that showed his bones have not been harmed by the steroids and lasix. That, plus the proof that he is not headed toward heart failure right now means that he got a mega dose of prednisone and another dose of lasix tonight and they are going to keep it coming for a while. 

He had a special test where he wore an oxygen hood on his head for ten minutes and then tested his arterial blood gas to see a carbon dioxide number in the 50s. This was positive as well.

But, no one really understands what exactly is happening in his lungs to cause his rapid breathing and terrifying carbon dioxide levels, so we are hoping the prednisone will give him a boost this time. 

Off to fall into bed. After not sleeping for two days, I can't wait!

Joy

some good news: echocardiogram looks improved

Julian got some good news today - his hart enlargement (right ventricular hypertrophy) has abated somewhat. What that means is that his heart is showing signs that it has been working less - meaning his body is doing a better job oxygenating.

Julian will start a course of Prednisone (steroid) and Lasix (diuretic) tonight.

Prayers

or good thoughts needed. Please send toward Jules.

He is having more tests tonight and may have to be re-intubated for a month and sedated if his heart is more enlarged than the last echo.

Joy

NICU stay extended

Unfortunately, Jules continues to post carbon dioxide levels in the low seventies, so it is NICU city for a bit. We were hoping that after lasix and peeing out another quarter pound diaper, he would improve. But, it didn't happen. We are all wondering if something else is going on (one attending posited that he had experienced a growth spurt and his lungs have not caught up,) and once again, using steroids, even Dex were tossed into the ring of discussion again. The pulmonary specialist saw Jules and decided to try an extended lasix course (which isn't so great for Julian's bones,) to see if it helps. So, for the next week, he is going to have lasix every other day. They also decided to try albuterol again, sustain the once a day inhaled steroid, and wait and see. So, given our longer than anticipated Children's NICU stay, we moved to a nice room with more privacy. We are all hoping Jules improves this week and gets to move back to the Peds floor.

Another night

in the Children's NICU. Hopefully, they will let Jules out tomorrow.

Joy

One step backward

When they checked Julian's CO2 this morning, it was bad news -- in the 70's which scared them. So, he got sent to the Children's NICU and we are hoping it is just for a short period of time. He is not ventilating well on the type of oxygen support available on the Pediatric floor and needs the higher level available in the NICU. We hope he can make it past this. So far, he is responding to the extra support with a better blood gas number in the 60s, but it should be in the 40s to be normal. An intense day and we were so sad to move, but still so glad to be at Children's. Joy

At Children's

What a crazy day!

It started with rounds at UW where we were told that Jules would go to Children's sometime maybe later this week, but definitely not today. He gained 13 grams and they gave him his synagis shot to protect him against RSV.

I visited with him all morning and left at ten thirty after being reassured he was definitely not going to Children's today.

At eleven thirty, they called to tell me he was being moved NOW and to come back to the hospital. However, I was busy going to Gigi's school with cupcakes to have her school birthday party. So, scott cancelled his day and rode in the ambulance with Jules to Children's.

Jules has a new room with a crib, no more isolette!

We met with the pulmonologist and felt very good about Julian's care.

Jules has a roommate. Her name is Amanda and she has been in the hospital since the day she was born at 24 weeks (her mom also had Preeclampsia) and she, Amanda has now been at the hospital for eleven and a half months! She also has chronic lung disease. The new pulmonologist calls the area of the hospital where Jules and Amanda reside, "Vent Village." All the babies there are chronic lung disease kids on vents, oxygen, etc...

We are exhausted and going to sleep. 

Thanks for all the prayers to get him to Children's. We are so very happy to be there.

Joy

Moving to Chidren's Hospital!

Today, Scott got a wonderful birthday present -- the call from the pulmonologist saying they have approved Jules to move to Children's and the best news -- based on the current oxygen requirement Jules has, the pulmonologist would be cautiously optomistic and say that instead of months more in the hospital, it may be as little as a month! Yey!

Scott is going to attend rounds tomorrow and find out what UW is doing about finding Jules a room/bed at Children's and when they think we will make the move. We are pretty excited. We will be able to visit him together as a family at Children's, sleep on the extra bed in his room, get him the kinds of physical and occupational therapy he needs, and have him seen by the pulmonologists every day!

Also - Jules is up 100 grams today to 2853 grams or about 6 pounds 4 ounces. This could be a sign of taking on fluid. 

Length - He is  up 2 centimeters from 43.4 to 45.4  in length.

Head circumference: He is up .5 centimeters from 34.5 to 35.

Joy

6 Pounds!

Holding Jules

Gigi got to hold Jules for the first time this weekend, which was wonderful. Jules gained fortyish grams each day on saturday and sunday, inching his way to six pounds. The NICU turned over and most of the babies born at the same time as Jules went home, which was hard to watch. Jules got new neigbors - twins born at 34 weeks in good health across from us and right next to us, a 23 week old baby born at home to a mom who didn't know she was pregnant!

We really want Jules moved to Children's hospital as soon as it makes sense. This weekend, he really turned into a newborn baby. He cries and needs comforting, but there aren't enough nurses to respond all the time. At Children's, one of us can stay with him in the hospital room and respond to his needs and care for him. Our goal this week is to convince the UW docs that having his parents around to take care of him is important medecine too.

Joy

Week 11

Holding Steady

Jules seemed in good shape today. he gained 46 grams and slept a lot. We changed a bunch of diapers and played him whale songs and rain sounds from his sleepy sheep. He loved it.

Joy

Good Steps

Julian had another good day.

This is what looks good:

- One of the lowest blood gas numbers (45) that he has ever had.

- The results of a chest x-ray on 12/28 may show an improvement.

- His echo remained unchanged, when they expected it to get worse.

- He did not take on any fluid weight.

- He was alert and calm with baby-like movements like chomping on his hands.

- Catch up head growth and along-the-curve length growth (Even if it is the 0%ile).

He slept on me for about five hours.

Happy New Year!

Joy

5 and 1/2 pounds!

Happy New Year!

Good day for Julian

Today was a god day for Jules. His echo showed the same heart enlargement as he had before, which is the best news we could have hoped for -- he didn't get worse. He grew in terms of length (but still in the 00.00 percentile) and in terms of head circumference (20th percentile!) and although he has had a crazy weight gain pattern, his lungs don't sound wet to the nurses, so maybe it isn't water weight this time. We are hoping he is doing healthy growing and especially starting to do catch up growth in length, which is what he really needs to do to get his lungs healthier. He was awake and alert and sucked on his pacifier for the physical therapist who felt reassured that he does not yet have an oral aversion. He charmed everyone in his swing and was pretty darn cute when we visited him this afternoon. Happy New Year! Joy