The good and the bad.

Bad first.
Ella may have been exposed to Chicken Pox, so she has been put on IV medication as a precaution.
Her eye exam this morning still showed no improvement to the ROP, but typically this condition will take 4-6 weeks to turn around. Not too bad...

Good news now.
Her blood test today showed that her biliruben count is down from 5.7 to 4.8. This means that her liver is starting to recover. Soon she will no longer need the liver medications, and her yellow skin will return to normal.

Also today Ella had a special x-ray study done to determine if she has kidney reflux. Almost since birth, she has been on antibiotics to prevent a Urinary Tract Infection, which could be caused by fluid leaking back into her kidneys (common among preemies). The test involves injecting radioactive dye through a catheter and then doing time-delay x-ray snapshots to check for leakage into her kidneys. Good news - she has no leakage.

Feedings are going really well. Her total feeds are now up to 65ccs, and she has taken 45ccs of this from the bottle.

Doctor Stevens stopped by to discuss the H word!!! Apparently he thinks that Ella is doing extremely well with her feedings - if she can get up to the full feeding of 65ccs by bottle, then he thinks that we can take her HOME. Even if her eyes have not fully recovered, we can return for testing once-a-week until they are good. Maybe HOME by early next week! Fingers crossed!

Love - Bill Denise Ella T

Delay - the sequel

Transfer to Elmira delayed again.

Ella's eye exam results on Tuesday showed no change in her ROP. This is good - she will only need laser surgery if the condition worsens, but the opthomologist wants to keep a close eye on her (wink wink). He wants to have her eyes checked weekly, but OK-d her transfer to Elmira.

We were getting set for transfer to Elmira again. Turns out that the opthomologist in Elmira is on vacation for three weeks and would not be able to check her eyes. So, we are still stuck in Rochester until further notice.

Not all bad. Ella will continue to get good care from her loving nurses here, and she will make further progress on her feedings. She is still being fed primarily from a tube, but working up in her feed volumes. If she can get up to a full feed from bottle/breast, then we might be able to take her straight home and skip the transfer to Elmira.

Dad has to go back to work starting Monday, so mom will be in charge of Ella for the weeks to come. Shooting for home by the end of October??

Love - Bill Denise Ella T

Clicking our Heels together...

Since our last installment, little Ella is now breathing freely on her own, and has started breastfeeding.

Her 53cc feedings are still primarily delivered through a tube into her stomach - pumped over 2.5 hours with a 1.5 hour break in between feedings. Docs are gradually compressing the time to allow her stomach to get used to processing the full amount at one time. She will need to be able to do this before we can finally take her home.

Breastfeeding is going well. We were initially concerned because some premies develop oral aversion and reject breastfeeding after not having any feedings by mouth for so long. But little Ella is a natural - she latched on at her first try. Mom makes about three or four of her feeding times every day, and the other times the nurses feed her a small amount (10ccs) in a bottle.

Even though feeding is going well, she is not gaining much weight. Docs have added in a suplement powder to beef up her calorie intake.

Her breathing is better, and over the last week she was reduced on her oxygen flow to the nose tube. Finally yesterday she had even the nose tube removed, and is now breathing on her own.

Lastly, we await her eye exam tomorrow. Recall that her last week's exam showed initial signs of retinal scarring (ROP). This should clear up by itself, but if not Docs will need to prescribe laser surgery. This may be the last thing to keep us in Rochester - we may be transferred HOME to Elmira for Ella's final weeks of recovery!

Love - Bill Denise Ella T

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