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

still oscillating

Little Ella is still causing us extreme heartache.

She puffed up to lil' sumo Ella (eyes swollen shut, and belly stretched taught and shiney), but finally started to pee Thursday evening - 36 hours after surgery with the help of a diuretic. And the pee was huge - 50+ccs went around the catheter and overflowed her diaper onto the bed!

She continued to pee and her swelling has gone down gradually (now looks like big lil' Ella), but she has still required high pressure and oxygen settings to maintain her respiration. Contributing factors are her underdeveloped/damaged lung tissue (BPD condition), lots of extra fluid around her lungs, and a partially collapsed right lung.

Got a scary call on Saturday AM - Ella had a respiratory incident which they had a hard time getting her to recover from. We rushed in to the NICU and spent a long day at her side. Her potassium levels were also down due to all of her peeing - so they have increased her dosage in her daily IV feeding to keep this from happening again. At the end of the day, they turned her onto her right side to help with opening her lung.

Doctors predicted that she would probably continue needing the oscillator over the weekend, and probably into Monday, but it is difficult to watch. As of this morning (Sunday - I lose track...) oxygen settings are slightly lower, but she has been fighting the oscillator and tries to breathe on her own, so they increased her Morphine dosage.

The ups and downs wear mom's and dad's nerves thin, and patience is difficult. But we are still hopeful that she will pull through. Will keep you all posted...

Love - Bill Denise Ella T

Re-Connected and Recovering

8/20/2009
Re-connection surgery took place yesterday morning. They took her away at 9AM for preparations, started surgery at 10 and lasted until about 12:30. Surgery prep included aenesthesia and re-intubating her for the ventillator.

Good news from surgery. The Re-connection went well.They found no necrosis (dead tissue) or constrictions of her intestine which would have needed to be cut out. They did find sections of intestine that were twisted from the previous surgery and could have contributed to her difficulties with digestion. These they straightened out before re-connection, so they should heal up fine. Also found - several spots of adhesion, where scar tissue had formed from the previous operation and attached her intestine to the inside of her abdomen. They freed these spots before closing her back up.

Tough news - little Ella is having difficulties recovering from surgery. Coming out of surgery, she is heavily sedated and the ventillator is doing all of her breathing for her. Her face and body is really puffy - also typical of post-op liquid retention, but it is difficult for us to see. They have started her up on a Morphine drip to control her pain as she comes out of sedation. Also, she has "soft" blood pressure readings, and doctors have put her onto several medications to help her bring these up. She was not peeing, so a catheter was inserted.

Several hours after surgery, she still was having difficulty breathing - her lungs are not very strong due to her BPD condition, and she has quite a bit of fluid in her lungs from the surgery. She needed a transfusion to help with her blood pressure. Due to her breathing problems, they had to switch her to the oscillator machine. We placed a couple of late-night calls into her nurses, and this appears to be helping her breathing.

So, her recovery is coming along slowly, but it is difficult to see her regress and hard to be patient. Her next steps need to be improvement of her blood pressure and breathing, and removal of the ventillator. Once she has stabilized, and she starts to pass poop, we can again try to start feeding her. No estimate at this point how long before we can try, but we are hopeful.

Side note - Ella's original due date was to be August 23rd, which will be this Sunday. She is now over 10 weeks old, and has grown to over 4 lbs.

Love - Bill Denise Ella T

Wide Awake

Not much.

Ella is now bulking up to 3 lbs 12 oz.

Still on the nose canula , without much reduction in flow since the last update. She has stabilized a bit, and with fewer "incidents" of low oxygen.

She had an eye exam, which so far shows no sign of ROP (Retinopathy of Prematurity), but her eyes are still immature - she will need another exam in two weeks.

Also, she had a lower GI study to check to make sure that her large intestine has healed any previous perforation in preparation for surgery. This involved injecting a dye into her rear hole and taking a series of time-delayed x-rays. Pretty cool actually - it shows how the dye progresses up through the system. Good news, no leaks were found and her lower GI looks in fairly good condition. Green light for surgery.

Feedings have been up and down for the last week. Doctors have switched her to a broken-down formula (Neocate), and have changed up the schedule several times. Sometimes she digests her dinner, sometimes not - it gets sucked back into the feeding tube when checked by the nurses.

Her re-connection surgery is quickly approaching - this wednesday Aug 19th. We have talked to the surgeon (Dr Lee) and his team - they feel that her re-connection should help to address her digestion issues. Could be a twist in her intestine or some scar tissue from the previous surgery that is interfering. Depending on what he finds during the surgery, it could take between 1 1/2 to 4 hours. The bad part about surgery - she will be stressed and medicated, NPO (nothing by mouth ) for 2 weeks and will need to go back onto the ventillator for a while. Hopefully she will recover quickly and will get off the ventillator and will be able to feed soooon. Fingers crossed - she can come home by mid-september.

Love - Bill Denise Ella T.

mostly pics

Hi!


Ella's first smiley-face tie-dye onesies.
Thanks Kathryn.

Belly News

Ella continues to grow. She is now up to 3lbs - 8oz.

Her breathing has improved significantly. Recently the doctors have tried giving her a diuretic medication that has helped to flush out fluid from her lungs (and makes her pee lots...). This has really stabilized her breathing and reduced the amount of extra oxygen that she needs. She still gets too comfortable at times when sleeping and stops breathing for short periods (sleep-apnia). This is something that she will grow out of as she gets older. Of course we cannot take her home until she decides that she is ready to cooperate...

This improved breathing is good news - makes it easier to hold her, and less stressful for mom and dad since her monitors beep much less often.

Her feedings have been up-and-down. Feedings of breast milk resumed on tuesday, but resulted in lots of residual stuff coming from her stomach. This means that her intestines are not processing the feedings fast enough. So, doctors have tried switching to formula instead of milk, and have tried lowering the rate of feeding, both with marginal results. Next we will try a pre-digested formula that may be easier for her to tolerate.


Ella's Nurses have come to the conclusion that Ella is sensitive to the light in the room since she breathes and sleeps much better when the lights are dimmed. So, they hooked her up with her own version of a 4-post canopy bed. Livin in style.

Probably the most significant news of the week - Dr. Lee has scheduled her re-connection surgery in 2 weeks - Wednesday Aug 19th. He feels that she has grown enough to tolerate the stress of surgery, and the sooner that he can get her hooked back up, the better. We are really nervous, but hopeful that she will come out of it and make a quick recovery. This gives us a light at the end of the tunnel - after surgery, it will take several weeks of recovery, but if things go well we could potentially be ready to take her home sometime in September (fingers crossed!!!).

This week mom and dad went home for a visit, and picked up a cradle, carseat, stroller, and other stuff. Ouch, this parenting stuff is not cheap. Also Ella had some good visits from Grandma and Grandpa T, Kathryn, and Grandpa C.

Thanks for all the continued well-wishes.

Love - Bill Denise Ella T

holding pattern

Not much news since the last post.

Little Ella continue to grow, and is now up to 3lbs 3oz. She is now over 7 weeks old.

In a holding pattern with her feeding and breathing.

Friday night she had about 3oz of green bile in her belly, but since then almost nothing. So, her belly seems to have calmed. We are hoping that the doctors will allow the feedings to resume on Monday.

Friday our little vampire got a transfusion since her hermatocrit (red blood cell) level was on the low side. This seems to have made her happier, but still she swings on her oxygen levels - mostly she just gets lazy and decides not to breathe for about 20 seconds at a time. Hopefully as she ages, she will see the error in her ways.

Love - Bill Denise Ella T