3 lbs, and breathing easier.

Since the last report, Ella has surpassed the 3-lb mark - double her birth weight.

Grandma and Grandpa T paid a visit to Ella on Monday and Tuesday while Bill and Denise snuck home for a couple of days. Grandma held Ella for over 3 hours on Monday - a new world record!

Unfortunately, her belly started to puff up again on Tuesday, and they had to stop her feedings. The test results came back OK, so she does not have an infection, and stuff continues to move through her intestines, but slowly. We are hopeful that feedings can resume soon.

And check out the picture - notice anything different? Yep, she has been switched to the "FP" respirator which is a much smaller nose tube. This is MUCH more comfortable for her, and she has been liking it. In fact, her oxygen was as low as 24% last night with very few drops in her Oxygen. Also, it allows her feeding tube to go into her nose instead of her mouth, so her tongue is now free to stick out at us...

Nurse Nan showed us the "Halo" blanket that prevents the blanket from covering baby face and causing SIDS. And gave us some pamphlets on baby sleeping and play time. So, they are starting to prepare us to take little Ella home. Yay!

Love - Bill Denise Ella T

Milk Please...

Great progress for Ella.

She continues to be very happy with the nose respirator, and is breathing easier. In fact, they have turned the settings down over the last few days so that now she is breathing entirely on her own with only constant pressure oxygen flowing into her nostrils. If she continues to do well, the next step will be an "FP" which is an even smaller nose tube to supply her with a little extra Oxygen.

Even bigger news, her digestive system has been put to the test, and is working well. Doctors started her out by feeding her a salt water solution (1cc every 3 hours). No residuals in her stomach and lots of goo and gas in her exit bag show that things are working at both ends. So... they decided that it was time to try breast milk - the trial of milk has also been going well!!

She is almost up to 3 lbs, and is self-regulating her temperature. So, she is Movin-On-Up to a big baby crib. No mo temperature probe either, so one less wire coming out of her.

One slightly down finding - her blood tests have shown low thyroid levels, and they have put her on daily medication for this. This is something that she may need to continue for life, but is really minor compared to other potential complications that she has avoided.

Visits from Grandma/Grandpa on Thursday - grandma got to hold Ella for the first time. Marva was a welcome visitor on Friday. Rebekah/Jen coming on Sunday for a girls visit, and maybe a trip to the Dinosaur BBQ...

Keep the good news coming.

Love - Bill Denise Ella T

Breath and Feed!

Big news for Ella. She has finally lost the ventillator breathing tube!

Tuesday while Denise held her, the tube slipped from the tape. Since she has been doing well, the doctors decided to give her a shot on the nose respirator instead. For the past two days she has been doing GREAT with less ups-and-downs on her oxygen levels. This is a good step toward removing her breathing tubes altogether.

In addition, the surgeons have stopped irrigating her intestine since she appears to be passing gas and liquid on her own. In fact, the decided to allow a test feeding of an electrolyte liquid starting yesterday. She gets a very small amount of liquid through a tube to her stomach. So far, so good. If things go well she will be able to start taking milk through the tube, and then later through normal feedings.

Lots of relief for mom and dad. Looks like Ella has turned the corner and is progressing well. We realise that it will still be at least one or two months in the hospital, and one more more operation. We now start to envision taking Ella home.

Love - Bill Denise Ella T

fashion

Ella continues to grow. Now up to 2 lbs 13 oz. Soon to be double her birth weight!

She still has the breathing tube and has ups/downs on her oxygen levels. We are a bit frustrated with this, but as she grows and her lungs mature she should be able to breath on her own. And, still not feeding her yet.

The surgeon and his team continue to irrigate her ostomy, and he is encouraged. The stuff coming out is less black goo, and she is starting to pass liquid and gas on her own. We may be able to feed her soon, but he did not make any promises...

Also big news, she can start wearing button-up clothes, and is modeling the latest preemie fashions in pink and purple.

We had a good visit from Jeff and Kal on Sunday, and got out for frisbee golf and dinner. And a surprise goodie package from Tracey Hayes on Monday. She was also stuck in an unfamiliar NICU with her first son Brady (born ~2lbs). Thanks Tracey!

Love - Bill Denise Ella T

Fidgety Chubster

Weight now is 2lbs 5oz - getting chubby fingers and a bigger head. We are starting to forget how small she was a few weeks ago.

Squirmy Ella pulled out her breathing tube Saturday Night. Apparently she was able to flip her head from one side to the other, which caused the tube to pull out. Not fun for Ella, because the tube had to be jammed right back in.

Surgeons continue to irrigate every other day - still lots of green/black goo comes out. X-rays show improvement in her bowels - less air bubbles. Some normal tan-colored stuff in her ostomy bag, which shows that she is moving material on her own.

Monday, tested her belly by turning off the suction to her belly tube. This will force her to start to pass material on her own. It is a good step toward feeding her. Tuesday, looks like we are getting movement - no puffing of her belly.

Mom got a "treat" when holding Ella on Monday. Ella continued to pass green goo after her irrigation, and a leaking ostomy bag pooped all over mommy. She was excrement-excited (ewww). Also noted, she "farted" out of her ostomy during bag change. An accomplishment, nuf said.

Ella continues to be very tempermental with her breathing, still on the respirator, and swings high/low on her oxygen readings. She is very squirmy and we start to wish that she was back to sleeping all of the time.

Anyways, good progress on her belly and growth. Still work to do on feeding and on her breathing.

Love - Bill Denise Ella T

1 month old

Since the last update, Ella is making slow progress.

She is now up to 990 grams (~2lbs 30z).

Still on the ventillator, but with good low settings. She is tempermental with her breathing, and swings high/low on her blood oxygen levels - a source of anxiety for Mom, Dad, and her nurses.

Making progress on her belly - irrigations are helping to cleanse her out, and her stomach tube is getting clear liquid instead of green. Getting closer to feeding her.

We finally arranged a meeting on Tuesday with the Surgeon (Dr Lee) and one of the NICU doctors. We feel much better now that at least we have a plan, and that the doctors are in agreement.

So, the plan:

- Still some air bubbles in her intestine. Dr Lee will irrigate about every two days to clear the air bubbles and to help clear out any clogs in her intestine - this will help her to start passing material and let her start to feed. Maybe in about 2 weeks.

- Slowly reduce the respirator settings, hopefully removing her breathing tube within a few days. Monitor liver functions through blood tests - potential liver problems can be caused by long-term feeding through IV.

- Dr Lee would like to try to delay her re-connection surgery until she is up to about 4lbs - bigger babies are more developed and would tolerate the surgery better. At her rate of growth, this will probably be about a month from now.

Dr Lee has been irrigating the ostomy - he sticks a rubber tube in about 4" and injects a solution, sucks it out, injects, sucks out. We watched as the solution in the syringe got really black and also got some air bubbles. This is a good sign.

Also, material coming out of her stomach tube is now clear instead of green, which means that bile is starting to move through her intestine. Dr Lee says this is promising and we may be able to feed her soon, like within a few days.

This week, Mom and Dad drove home on Wednesday to mow the lawn and start some house cleaning. And Thursday night, Jeff D and Jill hosted us for a great grilling dinner.

2 lbs!!! (Well...almost)

As of Sunday night 7/5, Ella weighed in at a whopping 900 grams - 7 grams short of 2 lbs!

Ella also continued to receive many visitors: Thursday Jeff & Jill Doebler stopped by to meet her. And on Friday T grandparents came for a visit followed by Rebekah, Matt, Claire and Hunter.

Friday night, breathing tube re-inserted - erratic breathing and puffy, hard belly...

Irrigation of her ostomy released goo and her belly back to soft.

Her breathing is much more stable with the machine, but it is a step back in her healing.

Saturday night found a slight trace of blood in her suction tube, so doctors ordered a blood test.

The blood draw was painful to watch... the nurse poked her in three separate veins and then finally had to resort to sticking an artery. Results were fine - no signs of infection.

Sunday night, her breathing is erratic - machine settings were weaned down. Returned settings up slightly higher and she is resting well.

3-weeks old already?

Ella continued to have a busy social schedule last weekend when she received a visit from Marcia and Tonya on Sunday followed by a visit with Gramma Jan, Gramma Jane, and Grampa Jim. Of course, she loved every bit of the attention.

Yanked out her replogle tube (tube that vacuums green bile from her stomach) on Monday for a slight reprieve. Unfortunately a new one had to be inserted.

Still weighing in at 790 grams (1 lb 12 oz).

Her intestines are still a big concern - the contrast material injected into her intestine still has not fully drained out. Even though the GI study as shown that there is now blockage, the doctors are hesitant to feed her until the intestines are functioning. She cannot survive indefinitely on the IV fluids, so we will be meeting with the surgeons tomorrow to get more info on her situation.

In the mean time, Ella's condition is stable, and mom and dad take turns holding her. She is much happier now without the breathing tube. When awake, she shakes-a-da-fist and kicks-a-da-leg.

More soon... Love Bill Denise Ella T