transferrus interruptus

We were definitely on the schedule for transfer back to Elmira sometime this week.

Then, Ella had her eyes tested again on Tuesday - the results will keep us here for at least another week for re-testing. Ella was diagnosed with Stage 2, Zone 2 ROP (Retinopothy of Prematurity) and depending on how her eyes are progressing, she may need laser surgery. Another roadblock, but not derailled.

Other than her eyes, Ella has been doing very well with her feedings. She has now totally switched over to breast milk at about 2 ounces (52ccs) every four hours mostly through her feeding tube. We gave her a first taste of breast milk (a tiny 10ccs) in a bottle on Monday also, and she seems to like it. It will take her a while of practicing to coordinate the sucking and swallowing before she can take her full feeds by bottle or breast. As of today, we are up to 15cc bottles three times per day with the rest of her meal by tube.

They removed her final main IV line on Monday (that had been in place for 3 months), which is confirmation that her belly is working well and will not need further surgery. Relief. She still gets medications, but all of them are now given orally with her feeds. Much easier on the nurses also.

We are still not totally sure how long before we can take her home, but the end is in sight.

Her latest weight is 4lbs 12oz.

Love - Bill Denise Ella T

more milk!

Good progress on Little Ella's Feedings.

Over the last week, she has gradually been given more milk and less IV fluids, and her belly is taking it. As of today, she is being fed 11ccs per hour which is almost a full feed. Over the next day or two, she will get up to the full feed rate of 13ccs/hr. At this point, she will no longer need her main IV line for feedings, so they could potentially take this out! She is now getting most of her medications through the feeding tube in preparation for taking out her last med line. Next steps will be to feed her in larger doses with short breaks instead of continuously, eventually working up to bottle or breast feeding.

Increasing her feedings is really important for her now, as her biliruben levels have been rising, and her skin is slightly yellow. She is now on two medications to protect her liver from damage. More feedings will allow her liver to process the excess biliruben and send it out with the poop.

She is getting older and more awake and aware. Sometimes not so happy - the nurses think that she has gas from the breast milk, and give her doses of baby beano, which seems to help out a bit. And the auto-rocker is her new ride (do they make this in big kid sizes?...).

Things seem to be going very well, and the doctors brought up the H word... Potentially we could be transferred to Elmira for the final weeks of recovery for Ella. Fingers are crossed.

Little Ella now weighs 4lbs 9oz.

Love Bill Denise Ella T

Milk Please.

Over the last four days, little Ella has made some excellent progress.

Her feedings have resumed, starting with pedialyte (a sterile eloctrolyte-water solution) which is pumped slowly into her stomach through a tube. Very little residuals and no green bile in her stomach confirmed that the stuff was moving down the line. Sooo, they started her on very small amounts of breast milk on Saturday.

Seedy Mustard Poo on Sunday! This is the ultimate confirmation that her surgery went well and her bowels are working. Relief. Since then, her feeds have been increasing in volume - 3ccs an hour, up to 4cc/hr today. Still getting most of her nutrition from the IV, but going in the right direction. For babies this size, she would have to get up to about 2 oz per feeding which comes out to about 15ccs/hr.

Other stuff - she is finally off of her morphine and versed pain meds, all of her IVs except for the main line have been removed, she is back in a big kid crib, and can wear her ever-expanding wardrobe of pink outfits and blankets. She is up to 4lbs 4oz.

Extubation at last!!!

Ella has made speedy progess on the standard ventilator and was deemed ready for extubation this morning! However, it was a busy morning and we almost got pushed back to Thursday, but at 3pm we got the green light for removing the tube. Mommy got a little nervous when we were waiting for the respiratory therapist and Ella got a little cranky and started dropping in her oxygen saturation. Then out of nowhere, Ella let one rip and was calm and happy as can be again. Lo and behold...a monster poop! Yes...Ella is pooping again...and doing it the old fashioned way into a diaper! We are all pleased that things seem to be starting to work in her belly...especially Dr. Lee. One of the nurses said she would have loved to have bottled up the joy Dr. Lee had over this big step. So now we are back on the FP nasal canula sitting pretty at 26% oxygen and the next step will be to try out her reconnected intestines with some pedialyte sometime in the next few days and after that restart tube feedings. First, we will let Ella adjust to breathing on her own again and make sure she doesn't have too many secretions backing up in her belly before we make her do more work... but we are making excellent progress!

Lots of love - Denise Bill and Ella T

Venting

Great progress for little Ella yesterday. They finally gave her a chance on the ventillator, and she is doing very well. The vent is still a tube directed into her lungs, but it only supplies a lower pressure and assists her with breathing if she falls below a set rate. So far, she has been primarily breathing on her own, and at a low oxygen setting of 24%. Doctors are very pleased, and say that she is now not far away from getting off of the vent as well - maybe a few days.

Also, they doubled-up on her lasiks meds to help her pee out additional fluids. Her appearance is much less puffy now, and she looks almost back to normal. She still has lots of fluid and goo in her lungs which are suctioned out regulary, so they will continue her on the lasiks to help eliminate the extra fluid. They are gradually lowering her morphine meds from surgery and oscillator - should be off of these soon.

Her weight is now 4lbs 4oz.

Love - Bill Denise Ella T

oscillating...

Eight days after her surgery and Ella is still on the Oscillator. She wants to breath on her own, which works against the machine to respirate her, so the doctors have increased her sedation several times over the last couple of days. Even so, she has been awake, sqirmy, and still tries to breath over the machine.

Slight reductions in her settings. Doctors have been monitoring her blood gas levels by taking samples every four hours. They look in particular at her oxygen and CO2 levels - these levels are critical, especially now as her brain is developing. Her lungs have not been healthy enough to sustain proper levels even on the respirator, which is why the oscillator is being used.

Rumors are that they might be able to take her off the oscillator and go to the respirator maybe today. We will believe it when we see it...

They have re-started her lasiks (dieuretic) medication to help her eliminate all of the excess fluid. She is starting to look better - like our baby instead of puff-baby.

Love - Bill Denise Ella T

better Os

Sunday, Ella still has problems breathing due to lots of fluid and goo in her lungs, and a partially-collapsed right lung. Adjusting her position and the position of the tube has not had much affect.

Doctors decided to try giving her some nebs last night - atomized medications that she breathes directly into her lungs. Within an hour, x-rays show that her lungs are clearing up, and her right lung is mostly open. She has stopped fighting the oscillator by breathing on her own and seems relaxed. By morning, they have been able to turn her Oxygen down to 30% - compared to 60-70% yesterday. This is the best progress that we have seen since her surgery.

Most likely she will still be on the oscillator for another day or two.

Love - Bill Denise Ella T