11/27/04 - Lexi is sitll recovering, getting back up to weight

	No real news to report, she is small, but gaining weight
	She is nearly on full feeds - most by bottle
	Labs were a bit off today, not sure why, but not bad after 4 very good days
	"We" are thinking that we can get her back home over the next weekend She has bottom sores to get better She has arm sores to get better, from problem A-Line

11/25104 - Lexi is recovering very nicely acting very normal now

	The 'Non-clinical' seizures activity will be rechecked via EEG on Monday.  She has not shown any physical signs of seizures
	Lexi is back to taking most feeds by bottle
	Lexi is so alert these days, she is really looking good, when mom comes and talks to her she really moves her head around to see mom
	Creatinine levels continue to decrease daily, looks like her Kidneys have recovered
	She is very light in weight During this episode, she became very fluid overloaded, meds and whatever They like to keep her a bit dehydrated While recovery was going well, they put her on some meds and cut back her fluids to dehydrate her slightly...they did a good job She got a bit over dehydrated, so now pretty much recovered from the episode, she is getting re-hydrated a bit

11/23/04 - Things are looking up, still recovering - lots of good news

	All breathing support removed CPAP, vent, nitrogen removed Breathing on her own, regular ole mile high air Lexi does not seem to be struggling on it, been on on it 30 hr now
	She is up to full feeds Took some from bottle Tuesday She seems to have missed having the 'full stomach' feeling
	Her Creatinine level dropped for the first time today!!!!!!!! That is a sign that her Kidneys are recovering from failure The level must continue to drop to indicate recovery
	EEG Tuesday indicates 'Non-Clinical' Seizures They found seizure activity, but her 'body' is not showing them They are upping her dose of Phenobarbital to prevent them, and will recheck in a week Sounds like they expect this activity to end after a few days on Phenobarbital Will report back when we get the scoop on what this means

11/21/04 - Lexi continues to recover slowly

	She is alert allot now
	On CPAP, hope it comes off soon
	Leix's kidneys are the slowest to recover, that is a concern right now She has some toxins in her blood that the kidneys are supposed to clear out, so far these toxins are not clearing well She is urinating well, so they expect (hope) the kidneys to recover
	The docs have restarted feeding her via ng tube, breast milk, 2ml/hr
	She got a bit torqued off today, and kicked out her A-Line - the girl has spunk (they did not need the A-Line any way and had considered pulling it)

11/19/04 - Oh what a difference a day makes, Lexi looks really good today!  She is about back to normal  YAHOO!!!!

	We would like to thank you all for the extra prayers and thoughts
	All her blood levels seem to come back closer to 'normal'...for her any way
	Vent will probably be pulled early Saturday They upped her nitrogen levels Thursday to help, it did PO2 levels are good Oxygen saturations are a bit high, but not a concern, when off vent she should bring them back down naturally to her 60-80 range
	Today was the first day that she has been awake since Saturday She is still really really cute They are giving her about 1/4 of the Phenobarbital that they were, probably helped to 'wake' her, she has not had a seizure in days This evening she was bright eyed and bushy tailed for about 2 hours
	One of the problems she had with this episode was a collapsed lung, they seem to think that is pretty much fixed now
	She is not so puffy today, she is not so fluid overloaded now
	Her color is so much better back to the pink with blue highlights No more 'marbled' look
	Our plan is to get her back to feeding this weekend so we can work toward getting her back home again
	Most of the week we wondered out loud about whether she would get a heart if one became available.  No was the unspoken answer...well she is strong enough once again...when a heart becomes available

11/18/04 - Lexi is recovering but still struggling

	Vent came out Wed, breathed on her own for most of the day She struggled with her breathing, was placed on CPAP overnight.  She did not do real well on CPAP, they put her back on the ventilator Thursday evening Apparently she is 'too wet' They are putting her on some nitrogen, about 19% oxygen (2% below regular room air)
	A-line removed, placed in another location.   Seems it was leaking a bit, and needed replaced On Lexi, an A-line is difficult to place A-line is real handy for monitoring blood levels and blood pressure, simple to draw blood, no new 'stick'
	For a few hours she had absolutely no tube or tape on her face, this is the first time we have seen her that way since birth, she is kind of cute
	They started lasix today (not sure why she did not have it all week) Lasix 'dries' her out She is very 'puffy', she needs to loose some fluid weight The plan is to dry her out so she can breath easier, and not need the CPAP or vent
	They started her back on breast milk via feeding tube, but stopped it when CPAP was started.  She seemed to tolerate it, but cant do that and CPAP her at the same time
	She has not woken up since on the Phenobarbital.  It really knocked her out, they are gonna stop it for a day to see if she will become more alert
	MRI results - The MRI showed a few more spots on her brain More stroke activity Strokes cause this episode?  Or were they a result?  No one knows Like before - no one is overly concerned (concerned, but not overly), they were small, and they want to wait a few days to see if there are any affects
	Lexi had blood transfusion Wed and Thursday, so the 'direct donated' blood is being used  THANK YOU ALL!!!
	We have not posted pictures, we have not taken any, she has not been all that pretty, hopefully we will get some Friday
	A few lines and Foley catheter were pulled Wed, she still has an A-Line (for gases) and they inserted a PICC line

11/16/04 - No new news, she looks and acts the same as yesterday

	Late yesterday (11/15) Lexi was put back on Phenobarbital to prevent seizures, she has been sleeping ever since.   The hope is that she adjusts to the Phenobarbital and wakes up so they can pull her tube out, and continue her recovery
	She is not on any oral or tube feeding...yet, hopefully in the next couple of days
	*** Special Thanks To C (you know who you are) for Direct Blood donation #2 to Lexi ***

11/15/04 - Looking better and actually recovering

	We would like to thank everyone for their support, we hear from lots of folks from all over, and you are all so kind and supportive.   These past few days have been very difficult for us, thanks for all the prayers
	Seems that all of her bodily functions are getting back to normal, for what occurred Saturday night most of the docs are amazed
	Lexi had some seizures today
	They started to wean her off her breathing tube
	She had a head MRI this evening, results not yet available Due to the seizures they are looking for strokes and any abnormal activity Since her body basically shut down Saturday night, they are also looking for any problems associated with lack of oxygen or similar problems
	Blood cultures are negative so far (preliminary) - episode not caused by infection?
	Seems that Lexi will pull through this, we should know much more Tuesday, we may never know the cause of this
	*** Special Thanks Goes Out to MW for Blood donation to Lexi ***  Children's is very low on O+ blood, out of concern for Lexi, Michelle directly donated to Lexi so that there is no delay or problem when Lexi needs her next transfusion C is organizing a blood drive for Lexi/Children's in Boulder Lexi seems to need about 1 pint of blood per month, does not sound like a lot, but she does get transfusions on a regular basis it seems Blood 'direct donated' to Lexi can only be done at Children's blood center, 303-861-6373 Blood donated to Lexi is stored for her for about 35 days, if she does not use by then, some other very sick child will get it Any blood type can be donated in Lexi's name, she may not get the blood but she will get credit for the donation

11/14/04 - Lexi is hanging in there, she seems to be recovering

	We are very concerned and scared
	Seems to us, she is recovering well, the docs aren't talking (guess we aren't asking) Still on the vent As her sedation wears off she seems to be back to some of her old habit, including complaining when her diaper is changed She is passing most every test they give her, she responds to stimuli, her vitals seem ok, although she cant maintain her temp They are still running in antibiotics, some maintenance fluids, med to keep her stomach acid from causing problems, and a couple others
	Still waiting for blood culture to see if some bacteria infection caused this episode
	Lexi had a head ultrasound, they found no problems there
	We are still within the first 24 hr window, hopefully we will find out more Monday

11/13/04 - Lexi is back in the hospital after a major set back

If we may ask, Lexi could really use an extra prayer or two today

We are not sure what is wrong at this time, but she got really sick Saturday night, she is very critical (she is stable and 'looking' ok to us) - next 12-24-48 hours will tell us more - we will report situation Sunday night, but here is what happened: She seemed sleepy all day, but ate very well around 8 pm we noticed that she was overly irritable, and pale, then we noticed her hands and feet were very cold Called  A, for advice (they said to call if we had any concerns), based on A, we noticed: Lexi's hands and feet were cold, fore head was cool, and slightly sweaty She was taking very big and deep breaths A had us check temp, was about 1/2 degree below normal A asked that we bring her in so they could check her out when we arrived at hospital (in nearly record time) within 45 min of call to A, Lexi was very pale, not alert and barely breathing - during the 35 min drive Lexi went down hill very very fast - she looked/acted so different there then at home. ER docs, A and CICU doc were all over her - instantly inserted breathing tube - she was barely breathing - 6 breaths/min They put in A-Line, IVs, catheter and other stuff They think she may have gone into septic shock, and that she was septic.  Perhaps some bacteria from her stomach somehow got into her blood...but they really do not know X-Rays and Echo of her heart and lungs indicate they are ok, and not the source of the problem - the docs are crossing possible causes off their list We were told that she was minutes from dieing when we got her to the ER...I am so glad Leah was so aware of her sudden changes, she went down hill so very very fast From a lucky perspective, we sure are glad she presented the symptoms while were were relaxing with her at home, and not later in the evening when we would have been sleeping

11/11/04 - We are adjusting to having Lexi home

	It has been so long since we have had a baby at home, we forgot how difficult it can be (lack of sleep {for Leah anyway}, figuring out if she is crying because she is hungry or what?)
	With Lexi home, we all report to 'Transplant Clinic' at Children's Hospital twice weekly. The transplant team checks overall health of Lexi, including checking her Oxygen saturation levels (stay in 65%-80%), and the 'sounds' from her banding surgery (over time they will tighten to be a perfect fit, eventually she will out grow them if a heart does not become available) The team makes recommendations if they see something not right, or feel some adjustment must be made We will report here on Lexisheart.com the day after clinic until there are major changes
	On Tuesday, we removed the feeding tube and are working diligently to feed her her needed calories via bottle These babies typically do not eat well, but Lexi seems to be doing fairly good At transplant clinic Thursday, she had lost a bit of weight, (but not a whole lot).  We will continue to work with her through the weekend
	Since Lexi's pulmonary artery 'bands' are still loose, she requires some supplemental oxygen Now we have this giant green tank sitting in the living room, it may become our Christmas tree this year There is a long hose attached to this tank that is connected to Lexi's nasal canula...so we can move her throughout the house fairly easily When she grows into her 'bands' the oxygen will not be needed J, a friend and and EMT in Larkspur, stopped in with Pulsox to help us check her need for oxygen at this altitude, we hooked her up, turned off the oxygen...her saturations were too low, darn it.  We had hoped to remove the oxygen

11/08/04 - Lexi is home now...waiting for her heart

	Docs have HIGHLY recommended that we do not take Lexi out and about She will not be getting any vaccinations until after transplant She cannot get a transplant if she has even a slight cold Being a 'preme' she can get RSV very easily, and with her heart issues she would have a difficult time fighting off the infection Needless to say, Lexi will not be going out to visit anyone Anyone who visits her, we request that you do not have a cough, the sniffles, do not sneeze, and that wash your hands thoroughly before getting close
	She is home on a 'wiff' of oxygen - the big tank will last like 3 months The docs were a bit concerned about the altitude Lexi lives at, wanted to make sure she has enough Cant wait to get the long tube, we are currently lugging around a portable tank with a 6-8ft hose - what a pain
	Docs at hospital wanted us to keep feeding tube in...just in case.  So far she has taken her minimum feeds via bottle...so far
	Lexi enjoyed the car ride home, well...she did not complain.   Hopefully she will like the car as much as Luke, seems to make our life easier since we spend so much time in the car
	Larkspur Fire Dept contacted us today to indicate that they are ready for us when a heart is available.  If we need transportation (like Denver rush hour and or snow storm) their EMS will provide if called.   We are an hour from hospital, on a good day They also know all about Lexi's heart so if something else comes up they know the details (i.e. she is slightly blue, and should be) Thanks J and S!!!

11/07/04 - Monday is the day YAHOO!!!!!

	We talked the docs into letting us try all feedings via bottle, they let us try, but she had to wait until Monday to come home.   Well, no more feeding tube for Lexi!!!! She can take all food via bottle with no trouble!!!
	She will be coming home on a 'whiff' of oxygen.  The heart docs are a bit concerned about altitude, we live at 6800 ft (hospital is about 5300 ft)
	We are all trained on what the hospital wanted us trained on
	We should post 'coming home' pics late Monday

11/05/04 - Getting Lexi ready to come home!!!!

	Lexi should be discharged Sunday or Monday - No Kidding!!!!
	Growing and looking more healthy, she is 5lb 12 oz or so
	Lexi is awake for 2-3 hours at a time, bright eyed she is
	She is off all support except a 'wiff' of oxygen
	Lexi still has feeding tube...for now Some/most of her feeds are via bottle Over the weekend the tube will be pulled to see if she can take all feeds via bottle
	Not sure of the plan but after some training for us (feeding tube placement, oxygen and baby CPR) we will be ready
	Seems the docs just want to make sure she keeps her oxygen saturations and other vitals consistent and in "Lexi's" range

11/03/04 - It is amazing how fast a baby can recover!!!!!

	Lexi is off all IV's except some Dextrose, that should come out tomorrow
	She is being given a little bit of oxygen via nasal canula, like 25% (room air is 21%)
	She started to feed from a bottle today (once she is taking all feeds from bottle the feeding tube will come out)
	Lexi was given a hearing test today, she passed
	She still does not have her voice back after being extubated (vent removed), that should come soon (she seems to be regaining it slowly)

11/01/04 - Lots of good news today

	Lexi is back to gaining weight, she is being fed once again
	Lexi is not being given any pain medications or sedatives any more
	EEG to test brain waves show no damage and no seizures Docs looked for several things on the EEG, damage and evidence of continuing seizures Lexi is no longer on  Phenobarbital, the Docs stopped it, the feel there is little risk of further seizures (and we all should keep watch) the strokes that Lexi has had is not concerning anyone, she seems alert and all limbs seem to work 'normally', EEG is clean
	Echo Cardiogram performed today to check banding Bands are consistent in size and they appear to be doing their job Overall, no concerns here at this time
	Lexi is on 30% oxygen via canula - to help keep her oxygen saturations up
	Lexi was awake and very alert all afternoon, looking cute She is very good at expressing displeasure Newly off of vent, her vocal cords are not working yet, so her cries are still a bit quite, that will change quickly