10/31/04 - Vent/ Respirator has been removed!!!! Finally!!!

	Vent was removed mid afternoon while we were at the Football game (we finally got out and did something different) She was put under a 'hood' to give her some extra humid air to help keep her a bit moist while adjusting to breathing without that tube Did not get any pictures - due to the hood (flash back to camera) - will probably get some Monday
	We think she really looks cute without the vent (she had it for 3 long weeks!) Sunday she was very alert most of the time, like pre surgery Her eyes were going back and forth up and down, (like Boohbah,) as if she cannot soak up enough of the world through her eyes She was going to town on her binky, first time in a long time that she could get a good grip on that
	She is down to 4 IVs Lipids - Extra fat to help her gain wait, she needs this until she is back on a regular diet TPN - Her 'food' delivered via IV, she requires this until she is back on a regular diet D12 - Sugar water Dopamine - to help bring her blood pressure down (as she adjusts the the banding and no vent) They have been turning this down steadily since Saturday afternoon She should be weaned off of this Monday They add a couple of meds now and then such as the Phenobarbital
	After reviewing the CT and Strokes the docs are not overly concerned Everyone will be watching for evidence of any more strokes If no others occur then all should be ok, she has a very young brain, and the strokes were very small Down the road (next week or month?) if no other occurrences of seizures or strokes, she will be taken off of the Phenobarbital

10/30/04 - Recovering - Air vent/respirator not removed, darn it!

	Couple of the drains were removed
	Couple of IVs removed
	Recovery from the surgery is going well, just not as fast as we had hoped
	Her incision on her chest looks so long!   She has her first battle scar
	Our hope was to remove the vent today but she was not ready, she was a bit tired for a new reason
	Lexi had a couple of minor seizures today Her foot would start moving, slightly, and only for a few moments The Docs tell us that these seizures, as small as they seem to be are very exhausting for her The Docs put her on Phenobarbital to control the seizures A CT was performed to see if there has been a stroke and/or any brain bleeding NO brain bleeding - that is a very good thing, very very good CT showed 2 small strokes - docs were not overly concerned at this point They tell us the the strokes probably caused the seizures, what caused the strokes? (that is the mystery) Once this Phenobarbital kicks in the seizures should quit and she should become more alert, and ready to remove the vent We will report more on this as we learn more, but folks here don't seem to be overly concerned

10/29/04 - Recovering from surgery

	Seems like she has made it through and is recovering very nicely
	It is mid-day the the day after, she has 8 different IV meds running, seems they are all to fix something - blood pressure, relieve too much fluid, pain and who knows what else
	Lexi is on room air for the first time in weeks For the previous 3 weeks they have been restricting (yes restricting) her oxygen to 16%.  By restricting the oxygen, Lexi's body would better distribute the blood, in theory Room air is about 21% oxygen Tolerating room air tells us that the 'banding' has done its job, she is better circulating her own blood
	Lexi's blood pressure is fairly normal and steady Regulating the blood pressure soon after this surgery was a concern She has some meds helping to regulate this, but it is steady She is passing this part of the post op test with fly colors!!!
	Drains are draining and her blood levels seem good She has so many drains, tubes and wires, but they all indicate good things Most of the 'attachments' should be gone tomorrow or the next day
	We will update tomorrow, hopefully with some cute 'Look mom no tube!' pictures

10/28/04 - Open Heart banding surgery has gone well!!!!

Lexi has made it through the surgery to 'band' her pulmonary arteries This was a riskier surgery then we originally thought, it has only been performed a dozen times or so (little did we know until we asked the question) Babies this small have very high pressures, making it dangerous to even open her up She is now in the CICU, hopefully never to return to the NICU (not that we did not like the NICU {it was a great place!!}, going back to the NICU would be because of a set back) She still is not out of the woods for this surgery, Lexi must next show everyone that she can tolerate the changes by maintaining her Oxygen Saturations and pressures, we will report back tomorrow afternoon on that status.

Keep praying for her!!!!  It seems to have worked so far!!!

10/26/04 - Waiting quietly

	Surgery for banding is scheduled for Thursday (10/28) at 11:30
	Weight is up to 5 lb 2 oz
	Fairly uneventful couple of days, seems like there is nothing to report

10/24/04 - Things going very well, 1 surgery down, 2 to go (banding and transplant)

	Lexi is back up to full feeds
	Only 1 IV running now, a Dextrose solution - only to keep vein open in case it is needed
	Weight is 5 lb 1 oz
	Since off Prostaglandin she seems like a different person, much more alert
	Banding procedure should occur mid week - not sure when Banding is a procedure where the surgeon places a band around the pulmanary artery to narrow it and reduce the blood flow and pressure in the lungs This is an 'open heart' surgery After banding, IV and Vent should be removed, then we can take Lexi home to wait for a heart
	Still on Vent - will be on vent until after banding procedure

10/22/04 - Stent Placement procedure completed successfully!!!

	Procedure to place the stent went well, the docs said it was difficult because her hear was not in a 'regular' position, it is a little turned.   No matter...the stent is in!!!
	She is now off Prostaglandin, 1 less IV to worry about and it is believed to help cause her apnea
	She has recently 'shrunk' a bit, having trouble with feeding, they changed to some formula that she seems to tolerate well

10/21/04 - Tolorating feeds better, Stent to be placed Friday (10/22)

	Lexi seems to be doing quite well recently, no real set backs
	Her weight is up to just under 5 lbs
	Lexi is on full feeds (via g-tube), meaning she no longer needs TPN and Lipids
	She is scheduled to have a STENT placed in her PDA (PDA is a shut from Pulmonary Artery to Aorta,click here for a really cool diagram, where the blue and red meet, is the PDA) Keeping the PDA open is key to keeping Lexi alive - they only way blood gets to the rest of her body If the STENT placement is successful, it will keep the PDA open, no need for the IV Med Prostaglandin The STENT placement is a Cath Lab procedure that requires the cardiologist to enter through an artery, work his/her way to the heart (to the Aorta) to get to the PDA and place the STENT
	Surgery for 'Banding' is planned for Monday (10/25) assuming STENT placement is successful

10/18/04 - No new news

	Should find out 10/19 when stent and banding to occur
	Recent information on the procedures to be performed Click Here
	Lexi is gaining weight, 4lb 14oz
	She has had some trouble tolerating feedings, but has done better today.

10/16/04 - No new news to report

	Leah got to hold her a lot today
	Lexi is holding pretty steady
	Still planning the Stent and 'Banding' next week (Tue & Thur?)
	Starting to feel like we are sitting around waiting for a heart

10/14/04 - Steady as she goes

	Thankfully not a lot of news to report, no news is good news
	She is about 4lb and 11 oz now - growing fairly steady
	The meds and the CPAP devise seem to be doing their job; she keeps her sats where she should (within reason anyway) and seems happier
	Plans are still on for Stent and 'banding' early next week
	*** Another Special Thanks Goes Out to Special Folks - Those Which Have Donated Blood at THC for Lexi or in Her Name***  Thanks C!! Thanks L!!

10/12/04 - Things are better...but she has a long way to go

	None of her current problems will prevent a transplant if a suitable heart becomes available
	She seems to have 'calmed' down with the latest CPAP devise, looks like she may be on it for a while, only problem for us is that we cannot hear her cry anymore
	Lexi continues to struggle, but that is expected (obviously not desired)
	She still has pulmonary adema, the hopes were that this would dry out some over the next few days, but we think it is getting slightly worse, but not a overly big concern by itself
	Her color is better, pink/blue, not so red (seems for her pink/blue is good)
	She got her second blood transfusion today (blood is infusing as I enter this)
	We got some 'cute' pictures today - we hope to have them up on the site tonight
	There is discussion of putting a 'stent' in her PDA and surgery to restrict her pulmonary arteries, early next week The Stent will prevent the need for prostaglandin (and would eventually be done before a transplant) The stent will hold the PDA open - she is small so it may need done a second time later 1 less IV running can lessen some of her apnea issues 'Tying' off the pulmonary artery will restrict blood flow to the lungs, forcing more blood through the PDA PDA is the only way to get blood to the rest of her body (The PDA on a normal baby would have closed and disappeared by now) With her current physiology, blood flows way to easily from the heart to the lungs and right back to the lungs.  There is nothing there to adequately push the blood thru the PDA She has one particular vein (pulmonary vein?) that is normally attached to the left ventricle, it is attached to the right ventricle Normally there is a 'dam' (a septum ) near this vein to interrupt blood flow, she does not have that so blood is very easily pushed right back into the lungs; this is known as Left Ventricular Septal Defect  This particular defect is in addition to her HLHS.

10/10/04 - Still not so good

Lexi continues to struggle The doc's would like to keep her blood's oxygen saturation (amount of oxygen) lower then normal (55-75%) She will breath too much air, then her 'sats' go into the 90%'s She also likes to take breaks in breathing dropping her 'sats' into the 20% range A more invasive CPAP devise was added today to better regulate her breathing and oxygen/nitrogen levels.  Pervious CPAP devise, although funny looking, was not getting the job done very well Her lungs are a bit wet, making it more difficult to regulate gas levels, the CPAP should help dry that out

Lexi is tolerating tube feeds very well, they are trying to get her up to 'full' feeds so they can pull some of the IVs out

10/08/04 - After a couple of not so good days...

	Lexi has struggled quite a bit with keeping blood circulating properly throughout her body
	She has gotten very tired, 'nippleing', breathing, circulating and all; yet she is so small and a preemie
	CPAP (breathing device) was added today, expected to be on it for 3 days or so
	Today they started a med to help circulation was started today, it is a blood pressure med, it should 'loosen' some of her veins to help circulate blood
	*** Special Thanks Goes Out to Our Neighbor N!!! ***  Lexi required a blood transfusion do to Hem level being too low Just yesterday Nancy donated to Lexi at Children's, Lexi got this blood

10/06/04 - Not much new news to report.

	Pics: 10/05/04
	Lexi continues to grow
	Oxygen moved up to 18% (regular room air is 21%) The idea is to keep her oxygen to a lower then regular level.  This forces the lungs to not allow so much blood in. This allows the blood to flow thru the PDA to the rest of the body Over time her internal pressures and the lungs will adjust such that she can breath regular room air and maintaining adequate circulation She is tolerating her feeds very well, started 'nippleing' today

10/04/04 - All is going well - Lexi is growing, Leah about recovered

	Pics: 10/03/04
	Lexi is being feed breast milk now
	Lexi's Apnea is gone
	Lexi is now in big girl bed (crib)
	Lexi is now wearing clothes