01/30/05 - Relaxing at home

	Lexi is doing so much better then she has on her two previous, short trips home
	Not spitting up feeing at all She is getting about 40 ml (1.5 oz?) every 3 hours She is taking about 30 from the bottle, the rest is dumped down her tube We hope she gets strong enough to take it all via bottle soon
	She is adding weight, she will weigh in at transplant clinic Monday morning
	Lots of new pictures of her, posted 1/30 and 1/29 Yes Luwana, she is watching TV - She swung for 3 hours watching it She stays so wide awake when she hears and sees things new, like she is trying to catch up with what is happening in the world
	Lexi is sleeping through the night (both nights at home so far) We don't bottle feed her at 3 am We have been dumping the 3 am meal down her tube, so she continues sleeping She has a couple drugs she gets at midnight, we wake her for those, then she sleeps until 6a meal time
	She has some sort of extreme hearing sensitivity She will wake up when the latch to the front door of the apt is opened, even when we try to use it very very quietly (and she is over in a bedroom!) If you close dishwasher she will wake up or jump (if awake) Don't dare open a bag of chips or dig in to a McDonalds bag, it startles her so much, it is almost funny!! Leave radio or TV on loud or let Luke wander around with his loud toys and singing, no bother to her...funny

01/28/95 - Lexi is out of the hospital and 'home' with family

	Everyone's prayers have been answered, thank you all so much!
	Little Lexi weighed in at about 6lb 7oz before her discharge
	Heart ECHO yesterday looked 'really good' according to the professionals, her heart appears to be adapting to her body well
	She came home on 8 medications, yes 8!!!! 2 for anti rejection 1 for seizures 1 to keep her a bit 'dry' 1 anti-biotic to prevent pneumonia 1 blood pressure medicine 1 stomach medicine, to prevent any acid reflux 1 anti-thrush medicine All but 1 or 2 anti-rejection medicines should be stopped  in 4-8 weeks (most less then 4)
	Lexi still has feeding tube in her nose She is getting about half her feeds through a bottle Anything she does not take via bottle, we give her through the tube We hope he stomach 'learns' to take full feedings by bottle Her stomach seemed to suffer the most through all of this, and it the last to return to 'normal'
	She is on a 'whif' of oxygen, not because she has bad oxygen saturation, but to help reduce any hypertension, she should be on this only a week or two, a few more good heart ECHO's will determine when.
	One special family that has given us very unselfish support through this is the family of MacKenzie, a baby girl with HLHS, awaiting a heart too.   She is now top of the list, she could use a few extra prayers, she when through a pulmonary banding this week
	Thank you Mark (Noah's dad) for your help today and for the support that you and Renee have given us (Noah is another HLHS baby with that has undergone transplant)
	Lexi is staying with us in our downtown apartment very close to the hospital for the next four months We need to stay close to the hospital in case of acute rejection, our home is too far away, acute rejection can come on real fast and make her very very sick After June 1, if all goes well, we can all move home to Larkspur
	We will continue to update Lexi's progress Daily or every other day

01/26/04 - Getting better and better, on target for Going 'Home' Friday

	Lexi is not out of the woods yet, it will be some time before she is fully recovered, but she has gotten over so many hurdles and was so very sick
	Things are going well on her new 'regular' unit at the hospital It is odd not having all of her vital signs checked ever hour or so It is quite on the floor The volunteers love to stop in and hold Lexi, that kid gets so much love
	Lexi is taking nearly half of her feedings by bottle She is getting more food per day then ever She looks like she is plumping up some She has a lot of catching up to do, she is about 6 1/2 pounds now
	We all will be staying in the downtown apartment for 3-4 months to stay close to the hospital in case of rejection issues, Leah has hauled lots of Lexi's stuff to the apartment
	If all goes as planned, she will be going 'home' on 8 meds, and be down to 2 by June

01/24/05 - Recovering, out of the CICU, go home date planned

	Lexi continues to do well, all those prayers are really helping
	ECHO today looked better then previous, her 'slightly used' heart is adapting nicely
	She acted happier today, not as uncomfortable - must not be as sore
	Lexi is doing so well she was transferred out of the CICU today, she is now on the 'floor' recovering, getting ready to go home, may we plan for Friday?
	She is taking more food from bottle, but still struggles with it some Feeding tube still in giving her the rest of what she needs She is taking more from the bottle each time we try No spit up today
	No more IVs running She is mainly on her anti-rejection and immunosuppressant drugs and a blood pressure med She takes Tylenol now and then for some pain Still on Lasix to keep her 'dry'
	Will post new pictures Tuesday

01/23/05 - 9 am - Resting

	Lexi is continuing to recover, they are moving slowly and not pushing her too hard
	She is off all IV medications She is on 12 ml/hr feedings, with some bottle feeding She is on a blood pressure med, to keep that low She is on a copule of anti rejection drugs (
	Echo performed Saturday, nothing new, nothing note worthy This was her second echo on the new heart They are looking for improvements in flows and that her new valves work right (there a a couple leaks, nothing abnormal for post transplant, that should improve)

01/21/05 - 7:00 pm - getting stronger

	No more IV meds, she is on a TPN, but very little
	Tube feedings turned back on, tolerating well
	Her 'jumper cables' are to be removed over night
	Lexi will probably be transferred out of the ICU unit over the weekend, then she will be monitored, learn how to eat and gain weight
	She is doing so well, thanks for all the prayers!!!!

01/21/05 - 11:30 am - off all IVs

	They pulled the last A-Line this morning, all meds, the few that are left are PO
	Lexis feeds were upped to 8 ml/hr + any she wants by bottle She spit up a little so the backed off the 8 ml/hr for a while Not sure why they backed off after one spit up, but fine by us, slower is better The team wants to put an IV back in, to run a TPN just to make sure she is getting enough nutrition, hopefully they will not need it long
	She was quite alert this morning and quiet, not complaining at all
	Only 'support' you can see is her feeding tube
	She still has her 'jumper cables' - the connections to her heart for an external pace maker, they will stay in a few days, until the team feels that her body has grown used to the heart

01/20/05 - 6:30 pm - Holding her own - no set backs

	IV Line near neck removed
	EEG showed nothing new - no surprises
	ECHO performed, we have no results yet
	Lexi has been on dopamine since transplant, it was stopped today
	The plan is to wean her off of Milrinone by mid day Friday
	Leah held Lexi most of the day
	Continuous feed running, no issues

01/20/05 - 1:00 pm - Better and better!!!

	Lexi is no longer on breathing tube
	Continuous feed was turned back on, pretty slow rate
	Lexi ate from a bottle this morning - drank it up Yum!
	More meds have been turned off, and some changed over to 'by mouth' (instead of IV)
	EEG results not in yet
	She will have an ECHO today to look at how well her new heart is pumping (on the outside it looks like it is pumping very well)
	They are planning to pull most of her IV lines today - an A-line and some central line in her neck area - then will put in a peripheral IV, what most of us think of as a 'regular' IV
	The team is moving slower then normal, which we are very happy about.  It can be frustrating seeing her hooked up to so much, but we would rather then not push too fast only to have her get sick
	New pictures will be posted tonight

01/19/05 - 11:00 am - Getting better - Slowly but surely

	Lexi was alert quite a bit this morning - she has very little sedation at this point Partially comfort issues - they had to 'suction' her a few times, she does not like that one bit (suctioning is when they 'suck' some of the gunk out of her breathing tube) She looks around with her cute Boohbah like eye movement (she cannot move her head much at all because of the breathing tube)
	Last drain removed, this was the drain attached to heart
	Lexi looks a bit less puffy - did not check but she must be loosing a lot of the extra fluid
	She has had a couple of episodes that appeared to be seizures Folks are not sure that is what they saw If so, it is not a surprise, she has had them before EEG will be performed mid day to check for seizure activity Hopefully these are not seizures - will report back
	Breathing tube 'should' be removed this afternoon, then we can get some really good pictures

01/18/05 - 9:50 pm - Looking better, no major problems

	Lexi was alert a bit this evening, was able to get some pictures
	Chest tubes removed (YAHOO!!!!)
	Foley Cath removed (DOUBLE YAHOO!!!)
	Connection to left ventricle (cant remember name) removed (measured internal blood pressures)
	Lexi's heart rate was a bit low in the afternoon, (after stopping Isuprel), once restarted, her heart rate went back up
	Blood pressure a bit high, once Isuprel restarted her blood pressure back down, don't know if it is related to the drug or not
	Looks like a little bit too fast
	She may have had a seizure mid day, not sure, they are keeping an extra eye out for that

01/18/05 - 11:30 am - Recovering, no set backs

	Knock on wood, Lexi is the set back princess, but no major set backs as of yet
	Her color is just amazing, it is like she is a new girl, I suppose she is with her new lease on life
	She is a bit puffy, fluid overloaded, but that is normal
	She is waking up now and then, looking around
	Channel 9 in Denver story on tv
	Denver's 7 news story about Lexi
	The plan for today: Remove Foley cath Remove 2 of the 3 drains (2 drain fluid from lungs, 1 from the heart) 3rd drain may come out as well, not sure More weaning from the vent Should be out sometime Wednesday No rush with this - though we would like to see it out, it looks so uncomfortable - but it is needed Remove a couple of lines, I do not remember what they are called: Central line near the neck A line that goes through her chest directly to her heart Start TPN late, then perhaps continuous tube feeding even later (just enough to tease her stomach)
	The team wants to move slower then normal since Lexi has shown tendency to over react (aka: get sick) when too much is done too fast

01/17/05 - 4pm - Lexi still recovering

	Channel 9 in Denver story on tv
	No set backs thus far
	Couple of the post op meds she was on have been stopped
	Lexi's temp is good, the new heart is beating a a nice pace, her color is a nice PINK (very little blue), Sats are at  98%-100 - far from the 50's she was in Saturday
	She was awake earlier, we snapped a few pictures, (one is above) - generally the pictures are not all that pretty, so most will not be posted
	Hopefully Tuesday evening we will have some 'cute' pictures of her

01/17/05 - 10 am - Lexi is doing well, recovering

	First we would like to thank everyone who prayed for Lexi, they were answered.  She will need more to get through these next few days
	She is recovering, when we last checked on her she was doing well The CICU all celebrated late Sunday when she pee'd, yes something so simple as her peeing!!!  That was a big sign they were waiting for to indicate recovery Her temperature had leveled out Her blood pressures have steadied in the range they want
	More more updates later today
	Thanks everybody for your support and prays, you all do not know how appreciated you are!!!

01/16/05 - Lexi has gotten the most precious gift of all, a new, slightly used heart!!!!

	Everyone's prayers have been answered, we thank you all so much!!!
	The last 24 hours have been a blur!
	Leah (mom) had been sick for a couple days and had not seen Lexi since Wednesday
	Lexi had not been a herself the last few days, but Saturday morning, after a large spike in her temperature she perked up, acted more like herself, like she knew something we didn't Infection was initially suspected, due to the temperature spike, and some spitting up Labs and X-Rays Saturday morning and early afternoon indicated no infection It is believed that Lexi had over heated Possibly too warm of room Being wrapped to much She is very temperature sensitive, proven on many occasions
	Then we found out there was a potential donor, with temperature scare, we about freaked out, her only shot so far, about blown We were told, a heart would show up when we least expected With Leah and Lexi both not being them selves the last few days, the last thing on our mind was a heart
	Later in the day it looked like the donor would work for Lexi and Lexi exhibited no problems Temperature in regular range Labs all look good X-Ray clear No infection Transplant was Ok'd, team sent out to get someone's precious gift to Lexi
	The procedure on Lexi started about 2:30 am Sunday at TCH We got regular updates from the Transplant Coordinator There were some minor surprises (such as the pulmonary veins not attached where they thought) but the team seemed to do their job well (well the team made the problems sound minor anyway)
	Surgery lasted, we think, until about 10 am
	We got to finally see her about noon The folks (doctors and nurses) in the CICU reported that she is recovering There are a couple of struggles, but nothing out of the ordinary
	We left exhausted and happy, for an afternoon of rest, we will visit Lexi this evening, then update this site then
	Here is a picture of Lexi soon after surgery - it is a very graphic picture, she is attached to several drains, 12 IVs, breathing tube, pulsox, foley cath, temp probe, stomach suction tube, picc line, A-lines and more.  This picture could be considered gross.   If you still want to view click here

01/12/05 - No new news, just growing and waiting

	Lexi is 6 lb 1 oz now, getting bigger, able to receive hearts for a larger range of babies
	She takes 2 or 3 small bottle feedings per day now along with her continuous tube feedings - she is tolerating this quite well

01/10/05 - Lookin' better, but could use a new heart

	Lexi seems to be awake all the time now!!! She is alert and becoming quite playful She smiles a lot Her mobile seems to be very entertaining to her
	Her weight is up to 2700 grams Just 30 grams under 6 lbs She is at 5lb 15 oz
	Feeds and meds are unchanged Finally, they are not pushing too hard They may increase feedings a bit Tuesday, to gain a little more weigh

01/08/05 - Staying stable, looking cute, where's the heart?

	Looks like she has slowed her 'down hill' moves and stabilized for a few days now
	Seems that the Digoxin is doing its job, her heart rate is in a nice range
	She was just moved to a private room, she will probably be in it until a heart arrives
	Feeding is going well Lexi is back to gaining weight, averaging about 25 grams over the past 4 days She is now at her heaviest, 2668 grams - about 5lb 14oz The volume and calories she is getting are lower then ideal (well, what they calculate for averages), but if she is gaining, then why fix it?

01/04/05 - Getting a bit sicker, really needing a new heart soon

	Lexi has been awake allot recently She smiles allot Lexi was a bit grumpy Tuesday, unusual for her
	As the feeding calories and volume were increased, she made it clear that it was too much and started to spit up allot Calories were decreased Volume slightly decreased
	Echo indicates that her heart is not pumping quite as well as it has been, not that it has been pumping very well recently
	Her  Milrinone is at .5 mg/kg/min - a large dose, but the goal to to stay at or below .5
	She was put on Digoxin Monday This is to help the heart pump slower, her heart rate has gone up quite a bit in the last few days This will also help the heart push more when it pumps

01/02/04 - Gaining some weight, laying around wondering when a heart will come in

	She is gaining about 20 grams per day, about 1/4 oz...or so
	Her  Milrinone has been turned down to a 'large' dose, of .6 (mg/kg/min - I think) She was at 1, a very very large dose .5 or below is the goal This drug helps her heart to pump and to circulate blood better
	Her feeding via tube is going real well She is still a bit lower on total calories then they would like, but she is gaining weight She takes a couple of small bottle feeds a day, she enjoys them but is not overly hungry since the tube is feeding her constantly
	Nasal Canula was removed today, that must be much more comfortable