Look Ma...No Breathing Tube

OK, so we were hopeful for the removal of her breathing tube ("extubate" for the med-types), but delayed pending the results of Ella's belly scan. Thursday early afternoon she rolled downstairs in her $60K super-bed with an entourage of doctors, nurses, mom and dad, for her Upper GI study, which involved injecting a dye into her intestine and doing a series of X-ray scans. We anxiously await results, but the surgical team is busy with surgeries and are unable to give us an immediate report. Rumors are good tho - the dye coursed through her entire small intestine with no blockage or leaks.

Thursday Evening - daddy gets his first grips on DaughterT. She likes it. So does he.


Friday, still awaiting full news on her belly. It is still a bit puffed up, but some good goo and liquid coming out, which is a good sign.


In the afternoon, daddy snuck out to play some pickup ultimate frisbee at a nearby park - good muddy fun.


Friday PM - mommy's first try for "Kangaroo Care" where Ella gets to snuggle into mom's bosom. They keep each other nice and warm, and Ella can hear mommy's hearbeat, just like old times... At one point, her breathing monitor just barely blipping and we called the nurse over in concern, but in fact Ella was just in super-relax deep sleep mode. The nurses finally kicked mom and dad out at midnight.

Saturday AM - to our delight, Ella has been extubated! No more ventillator!!! She is breathing easier and looks much more comfortable with an air supply that blows into her nostrils. This is a very good positive step, and could possibly start feeding her soon.

Ella had a good visit from Uncle Jeff and Cousin Luis, and squeezed fingers. With her tube out, she can now cry and gave us a tiny-t wail, but cant compete in volume yet with the neighbor kids... We all went out for lunch - picked up Jeff D, stopped for a visit to Jill's gourmet food market, and then went to Park Street for an awesome streetside lunch. Great food, great company, and refreshing to get out.


Saturday PM - mom gets another night of Kangaroo. puts Ella fully out.

Good stuff over the last couple of days. Tomorrow, Ella is looking forward to a visit from Tonya and Marcia. And dad will escape the girl stuff for a while (maybe frisbee and a visit to Lowes?).


G-night. Love - Bill Denise Ella T

Big Ups

Much positive progress today for little Ella.

Mommy got to hold her for the first time, which was a big treat - both mommy and Ella will sleep better tonight...

This was possible because Ella's blood pressure has stabilized, and she has been taken off of all of her drug drips except for antibiotics and the electrolyte solution that feeds her.

Also a major accomplishment - she had her first bably poop today.

Tomorrow morning she gets a belly scan, and if things go well we may be able to take out the breathing tube and start feeding her!

More detail follows below if you dare...(warning, getting dangerous with medical jargon...)

Since birth, she has had problems maintaining a good blood pressure (causing mommy much heartache over all of the monitor beeping when the pressure swings low). She has been getting lots of drugs (dopamine, dobutamine, and hydrocortisol) to bring it up. Over the last few days her bp has been getting better, and the doctors "ween" her off of the drugs by reducing the amount gradually. Today, all of the drugs are DC'd (discontinued), and her blood pressure has stabilized!

As of yesterday, she had two IVs - one going into her arm and one into her leg, and also an arterial line which fed a tube from her other arm into a main artery. And, an O2 sensor on her foot, a skin temp sensor taped to her underarm, heartrate and breathing sensors taped to her chest. Into her throat goes a suction tube down into her tummy, and a breathing tube into her lungs. By this morning, they removed the arterial line and one of the IVs, so there was much less stuff trailing off of her. We are reminded of yesterday - she had up to seven drug pumps running on her all at once, now down to two!

Her belly is also getting some attention today. Doctors came by several times to check out her ostomy (her small intestine now pokes out the side of her belly and drains into a plastic bag - eventually they will do further surgery to connect her back up with her proper poop hole). They flushed it out with a small tube and pulled some sticky green goo out. Also, she had her first poop! This is a good sign that at least her meconium (baby poop) is starting to loosen up. She will get a scan of her upper GI (gasto-intestinal?) in the morning, and possibly inject a solvent which will help to dissolve the goo in her intestine. Once this stuff is cleared up, we should hopefully be able to remove the breathing tube and start feeding her.

We miss home, but the doctors and nurses here have been great. We are staying at the Ronald McDonald suite in the hospital, which is really amazing - tonight was pizza night (donated by Papa John's).

Thanks for all of the thoughts and prayers.

Love, Bill Denise Ella

Quiet Weekend

Ella has been doing very well since her surgery on Friday. Not many changes and she has remained stable. This however does not mean that she doesn't stress her parents out with a few brady epidsodes or drops in her blood pressure. The staff here are very good at clearing up these issues very quickly and Ella doesn't seem to be too disturbed by these moments. She did need to get another transfusion last night since her platelette levels have dropped a bit...but this is to be expected given the healing process her little body is going through. We continue to keep a close watch on her tummy to ensure that she does not develop an infection and hopefully she will start to grow big and strong very soon! Today, Grandpa Jim and Gramma Jane Trondsen are coming up for a visit and are sure to be happy to see Ella and be impressed at how alert she has been lately. Today, Ella weighs 760 grams or ~ 1 lb. 11 oz.

8 Days Old and Surgery #2

Today baby Ella is 8 days old...and has probably undergone more medical proceedures than I have in an entire lifetime. We are now up in Rochester, NY at Strong Memorial Hospital so that Ella can receive the special care and attention she needs. We arrived on Wednesday night, June 17 and has remained fairly stable. The doctors here did decide to go in and close the ductus (and a rather larger one we are are told) in her heart so blood can start flowing properly through her little body which will hopefully lead to a quicker recovery. The next few days we will try to get Ella some rest and hopefully recover well from her surgery. At some point down the road we will work on fixing her little belly, but in the meantime...now it is time to grow.