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