Thursday, March 14:
We spoke to the surgeon at 11:10 am. He stated that tomorrow at 10 am they will take her off the heart/lung machine. He looked again very encouraged that the left ventricle was showing signs of improvement. This morning another very promising sign: her little heart has begun to generate its own blood pressure. So far, the heart/lung machine was doing all of the work. The true test will be tomorrow, when her heart will no longer have the support, and have to bear all of the pressure on its own. The surgeon said it will be a very "touch and go" situation, and that if it fails tomorrow, the chances of it working after that are slim to none. We pray for a good outcome. She is in God's hands.

Friday, March 15 (10:40 a.m.):
This morning, around 9 am we went in to Alexis's room and found the cardiologist (a new woman - the usual one is out today) and the surgeon, doing an echocardiogram when they found a blood clot at the bottom of one of the ventricles. Apparently one had formed two days ago and thinned, but it has returned. It is a "cup shaped" clot, which if anything, is somewhat good. A full clot would be worse. This will complicate the procedure today significantly.
If the clot dislodges and enters the brain, it could cause a major stroke. (It could also cause a minor one, undetectable until years down the road). There is also the hope that nothing comes of it, and it dissolves with the help of medication after she is off the heart/lung machine.

Ironically, the surgeon is very pleased with the way the heart has progressed. All of the repair work is working pretty much as hoped. They made the decision to go ahead with taking her off of the machine b/c the machine could continue to cause more complications, including more clotting. We have been aware of the possibility of complications derived from her being on the heart/lung machine, but we had to accept the lesser of the two evils.

(1:40 pm)
Little Alexis's heart has been pumping all on its own for an hour and a half! She is quite a fighter....the surgeon seems "all smiles" as of now. The procedure is over, and we can breathe a small sigh of relief. This is a small, yet huge step...we are holding our breath, hoping the blood clot (which is still there) does not dislodge and travel to the brain, causing a stroke or worse. As I write this, I can't believe it myself...first, that we have made it this far, and second, that every second, every minute, every hour is hanging on the balance. If we thought it was scary before, it really is now.

(2:05 pm)
Great News! Kevin just spoke to the cardiologist after she performed the echocardiogram...she says that what they first thought was a clot at the exit of one of the arteries, is gone! She believes what they saw before the procedure was a swirling effect (the beginning of a clot) caused possibly by the heart pump. One less thing to worry about...we are back to just worrying about her heart keeping the blood pressure up. With the help of a slight dose of medicine, which "jump starts" her little heart, she is still on her own. As you can see, every minute counts.

(3:45 pm)
Sorry this won't be as good as Maria's writing. Well I can already tell the rest of this day will be up and down... Her heart pressure dropped some so they had to up her medicine. It helped get it stable for now. We will keep everyone updated.

(7:00 pm)
So far with the extra medicine she is keeping her heart rate at a reasonable level...

Saturday, March 16 (9:20 am)
Well I never thought I would be excited to say that my daughter has had "high" blood pressure, but she does! They said that her heart is pumping good, and the medicine they were using to help her heart produce more pressure, did a little too much since her heart is pumping better now....so they are trying to take her off of all medicine. To say she has guardian angels watching over her is an understatement...her nurses and doctors are excellent. Last night two nurses gave us a wonderful gift...they made a plaster heart with her little hand and foot prints. How hard it must be for them not to get too attached!
The Surgeon just told us if everything goes well today he will close up her chest tomorrow around 9:00 am.

(6:20 pm)
Everything is still going good! She has been stable since around 4:00 pm yesterday. They have stopped the medicine they used yesterday to make her blood pressure go up.

Sunday, March 17 (9:25 am)
Everything went well through the night... We are just waiting for them to do another echocardiogram, then they will close up her chest. She will still have a drainage tube through another incision that will relieve pressure incase of bleeding.

(11:45 am)
Even better news....Alexis came trough the "stitching" with flying colors...I spoke to the cardiologist and surgeon after the procedure, and as she was reading the echocardiogram. The cardiologist was praising the surgeon for such great work...she was amazed at his skill, as was he at hers...apparently the work is flawless..hardly detectable. The aortic arch is virtually seamless. The only concern is that the pulmonary artery is slightly "thin", but we may not know the full effects of it until months or years down the road. Today is the first day I have heard the doctors speak as if she will survive. The cardiologist was calmly trying to explain to me the seriousness of the whole procedure, and how in awe they are of how far we have come. The surgeon again emphasized he had only heard and read of this type of defect....he has certainly made history, at least in this hospital, if not in San Antonio and beyond. He stated his biggest concern was her small size...that if she had weighed just one more kilo, he would have felt a lot better going into the surgery.

The day we walk out of here with our little angel Alexis we will face an even bigger dilemma...how do you thank someone for saving your daughter's life?!

Monday, March 18 (1:55 pm)
Thank you, Lord for another day with our little Alexis...
They continue to wean Lexie off of more and more medication. They are also slowly but surely weaning her off of the respirator..it may take a couple of days from today. The surgeon has also suggested to take the chest draining tube out tomorrow, which is also a good sign. He is always concerned with the possibility of infection, and does not like any more open wounds than necessary. This afternoon Alexis will get her first taste of food (from mommy's "stash") :)
Hopefully she will react well to it...they plan on feeding her through a tube in her nose...poor baby. This morning Lexie greeted me (her mommy) with wide open eyes. She seemed more alert than before, when her gaze was almost right through you. At times, if I rub her little head, she will ever-so-gently squeeze my finger. It warms my heart :) She does not like the doctors suctioning her..it elevates her blood pressure.
We STILL hold our breath every minute, every day. We just hope no bad news clouds our few moments of rest these days. Please keep up your prayers. To say they help is an understatement :)

(5:40 pm)
The feeding tube is in place, but no feeding yet...something to do with the way it is positioned, and waiting to move it to a more stable position. We spoke to her original cardiologist, Dr. Schroeder, after he has been on vacation for the past few days. He said he was very happy with the outcome so far. Also, the chromosome test came back negative, meaning that she is NOT missing chromosome 22, and does NOT have DiGeorge Syndrome. Great news! In other words, this heart defect was just bad luck, to say the least!!!

We have received numerous emails from friends and family. We have even been receiving messages from those we have never met. We wanted to share one particular message from a "friend of a friend".  They have touched our hearts...to know that we have reached so many people, that our little daughter, who is only 2 weeks old has affected so many....is truly amazing. We can't begin to thank you enough.....
Click here to read the message

Tuesday, March 19 (11:25 am)
The surgeon came in this morning to examine Alexis' drainage tube, and he is not quite ready to remove it...it may be a day or so still. We are still waiting to hear if the acidity test reveals that the acid lies in the kidneys or the lungs...this will determine when she will come off of the breathing tubes. The surgeon also said he will remove the stitches in two weeks, so we are thinking that we will be here at least that long. She may be moved back down to the neonatal intensive care, but nothing is for certain.  Like the doctors said, we are on Alexis' time, not her on ours. The nurse calls her "unstably stable", meaning that she will become more stable as she reacts well to weaning off the medicine.

(8:40 pm)
Alexis has had what they term an "uneventful day". Well, I beg to differ. She squirms quite a bit when they suction her tubes and turn her...she opens her eyes, and her blood pressure rises, which scares me, but apparently is to be expected. I especially hate to see her gagging on the oxygen tubes! They keep reassuring me that she is not in pain, just uncomfortable. In order to alleviate her discomfort they give her some medicine to put her to sleep (not anything too strong),  and it seems to calm her down.
The cardiologist gave her another echocardiogram, and showed me  her heart function in detail. The left ventricle's back wall is still not "pulling its weight". The bottom is pumping away, but the back is still weak. It was working better the day they took her off of the circulation machine. This means they do not want to stress her in any way, and give her heart more time to strengthen. They will not take her off the breathing tubes until they see more progression. I'd be lying if I didn't say I'm a little disappointed, but I have to keep reminding myself to thank the Lord that we have even REACHED that point...that she is still here with us.
Since we are on Alexis' schedule, it is hard to say how long we will be residents of this hospital. The closest answer I have gotten is that she will be here at least 3 more weeks...1 week from today on the oxygen, and perhaps 2 more weeks after that if there are no more complications. I look forward to the day she is what they call 'extubated', meaning she will be off the oxygen...and off the draining tube. I will finally get to hold her...
Her acid test came back a little on the high side, and as we speak they are double checking it. The nurse says that it could be related to her kidneys, or her heart and lungs. They will give her more medication to control it.
Daddy bought Alexis a CD player and some lullaby CD's to soothe our sweet angel to sleep. I think it's soothing mommy too much...so hopefully it won't affect the nurse - we need her alert :)
Thank You Lord, for another day....

Wednesday, March 20 (2:15 pm)
Not much has changed yet today.  We still don't know when they are planning on taking out the drainage or breathing tubes.  We really appreciate everyone's prayers and support.  Your emails have touched us probably more then anyone will ever realize. In one thought I wonder how we could be so unlucky for this to happen, in the other I'm so proud to know my daughter has touched so many people!

Thursday, March 21 (2:20 pm)
Alexis had a bit of a rough morning...at 5 am they tried taking her off the breathing machine and she did not respond very well. They had to increase her oxygen again and some of her medication, in order for her to stabilize again. As of right now she is stable again. They may try to wean her off again by early next week, but again, we are on her schedule. She is so strong...she amazes me. I think I am wearing out before she ever will. ( I may age about 30 years after all of this is said and done).
We know God is still walking beside us, sending angels to watch over her every day and every night.

(12:00 am)
We had a slightly stressful afternoon. Alexis did not respond well to introducing another roommate. Apparently, someone thought it would be a good idea to place a 4 year old boy in the same room with her, and attempt to find a good place to inject him with an IV line....let's just say that poor little boy was in a lot of pain, and was very vocal about it, as was his dad. Alexis' blood pressure certainly rose, and finally Kevin requested that perhaps they could make both families more "comfortable" by allowing each family to have their own rooms. Our nurse agreed :)
Later in the evening, Alexis had some difficulty breathing - perhaps a direct result of being on the breathing machine...how ironic.
As the days go by, everyone from the anesthesiologist who said "I cannot be optimistic" a few days ago, to nurses from the hospital where she was born, have just stood over her and said what we already know: "she's a miracle".

Friday, March 22 (3:00 pm)
Alexis had a better night last night. This morning we came in and found that they had taken out her drainage tube...a nice surprise. The nurse and the surgeon explained that this may scar more so than her other incisions. I can see why...it's basically a hole in her little tummy, right above her belly button. The doctor will not stitch it shut..it will heal from the inside out.
Her CVP line in her belly button was taken out as well. The doctor was concerned about the risk of infection, since her white blood cell count was slightly higher today (25 as opposed to 24 yesterday), which could mean infection has set in somewhere....that is why they are trying to take as many lines out as possible. She is up to 14cc's of milk every 4 hours....and her tummy is growing bigger. She is at 6 1/2 pounds, give or take a few ounces.
Boy, does she have a temper! Although she can't make any noise with the breathing tube, she visibly gets VERY upset when she is moved or suctioned. She turns a bright red and gets very "mottled". She still requires some mild sedatives to calm her down. They are mostly to make her sleepy, not to keep her from moving.
The surgeon was pleased with the echo performed this morning (at first glance b/c they had not studied it closely when we spoke). He assured us it will be a long road yet. We are just so thankful to make it this far...we'll be next to our little angel as long as it takes.

Saturday, March 23 (10:00 pm)
Correction...for those of you wondering how Alexis went from 3 lbs to 6 1/2 in a couple of days...NO, she did not just start gobbling tons of breast milk. The nurses were telling us her weight in KILOS, not pounds. Who knew?! 2.2 lbs = 1 kilo, roughly. Hence, 3.17 kilos equals about 6 1/2 pounds. Oops. We are learning new things every day.
This morning the surgeon and doctors decided to place another drainage tube in Alexis' side, after reviewing her x rays for the past couple of days. There was quite a bit of excess fluid building up on her right side, outside of her lungs, placing more pressure on her chest. They were trying to alleviate it for the past couple of days with more lasix (a diuretic), which seemed to be working until this morning. The difference in her since they placed the draining tube is amazing! She drained about 100 cc's (close to 1/2 a cup) of fluid. This is a lot considering her size! She was much more bright-eyed and responsive today. She did not seem to get so annoyed by slight movements like changing her diaper, etc. Poor thing..she was probably in some pain or discomfort because of that excess fluid!
We can't dwell on that, however. We need to be thankful that they have gone one more step in the right direction.

Sunday, March 24 (6:15 pm)
This morning I found Alexis with a little bit of a fever...she hasn't been as bright eyed as she was yesterday. Her color still looks better than it has (apart from this morning, when she was a little red from the fever). The draining from her chest continues, though at a smaller rate. The cardiologist said today's x-ray of her chest was good, but not as good as yesterday. There may be some fluid build up on her left side, but they are not sure.
The preliminary blood work which was sent yesterday shows no signs of infection, but it could take days to make sure. They will continue to test her blood, especially this week, when the threat of infection from her chest being open so long could rear its ugly head. Apparently it can take 10+ days from when she was stitched closed for an infection to show up, and we are nearing that deadline.
Dr. Bloom (the cardiologist) also said we can expect her to be at the hospital at least 3-4 more weeks...in other words, the end of April. After she is extubated and on the road to recovery, she still has to learn how to eat again, etc. Babies sometimes have an aversion to eating or placing anything near their mouth after having the oxygen tube in for so long....who can blame them?!
We are trying to still take it one day at a time...but the end of April seems VERY far off. We just keep telling ourselves that we should be patient. After all, just a little over a week ago we were told we had a slim chance of taking her home at all.....
In the meantime, Kevin and I are trying to get ourselves to rest as much as we can. We are still staying at a hotel a block away from the hospital. It's very hard to leave her for an extended period of time! At times, we feel awkward at her bedside, like we could get in trouble for interacting with our own daughter. We can't wait to take her home, when she will be ALL ours :) In the meantime, I can't face going home to Seguin without her....

Tuesday, March 26 (11 am)
Oops..we forgot to update yesterday :) It was a good day...Dr. Bloom was very pleased with the way she looked yesterday. Her color was better and she was more relaxed. Sunday night she had drained an additional 86 cc's of fluid! As of this morning, it is minimal, which is a good sign. Her chest x rays didn't reveal anymore excess fluid either. She continues to sleep most of the day. They give her a dose of a medicine which makes her sleepy for an extended period of time (roughly 4 to 6 hours) - I believe it's called Chloral. Another "sedative" is administered more frequently, as needed - Adavant (sp?). The good news is that when she IS awake, she is very responsive and alert. Her eyes seem to take in everything around her. We joke that she is looking for the person responsible for making her upset...usually after she is suctioned (this procedure involves inserting a small suctioning tube through her breathing tube, nose and mouth). Let's just say she does NOT enjoy this...who would?
Hopefully if the drainage tube in her side slows down, she will progress to weaning off the breathing machine. Her dosage of Dobutamine is being lowered as well.  This is one of the last medicines which have helped give her heart a little extra help. She will continue to receive a similar type of medication orally...we will most likely go home with several.
We continue to be in awe of all of the wonderful family and friends (especially those we have never met) who offer us an incredible amount of love and support. Thank you, and God Bless you :)

(7:30 pm)
Today was a great day! All of her signs look real good so they have started to wean her off the breathing machine.  They are going to try to take her off tomorrow around 10 am. The drainage around her lungs seems to have stopped so they will also take the tube out.  If everything goes well they will move her back down to NICU.  Hopefully this will be one of her last major mountains to get over!

Anyone who has ever had a religious conversation with me (Kevin) knows I have always been a "little skeptical" to say the least.  But with all the miracles I have seen happen with Alexis on a daily basis that has changed!  I have had so many prayers answered that it amazes me.    I have to share one with you...  About a day or so ago I went to chapel and asked God if he would please take the pain away from Alexis and give it to me.   Well since then Alexis seems to be doing the best she has been since before surgery, and as for the pain well I do have it now.  One of my wisdom teeth has started to cause me a lot of problems.  Some might say that is a coincidence, but I have had all my wisdom teeth in for around two years now. So the only way I can explain why it started hurting now is by an answered prayer.

I also wanted to say thank you to everyone at Story Communications (our work place).  Maria and I really are amazed by everyone's love and support. A big THANK YOU to everyone who helped me out by donating vacation days, that really helps!

I've had a few people interested in how many hits this website has been getting. So for whoever wanted to know these are the total user sessions & hits for March 14th-25th (this really shocked me):
User Sessions: 1781
Hits: 33,140

Wednesday, March 27 (5 pm)
Sorry for the late update :) Alexis was extubated (removed from the breathing machine) at around noon today. So far so good. We have not been able to be with her as much today, since the nurses and doctors are trying to reduce any stimulus that could affect her transition. She is in effect learning to breathe on her own again, almost like she was just out of the womb.
The few minutes we did see her, she was really alert and sort of fussy. This is understandable, since they had not fed her for 6 hours previous to the procedure. Also, they have not given her any sedatives, and she is almost completely weaned from most of the other medicine. She is going through some withdrawal symptoms, which accounts for her restlessness. She is what is termed "tachicardic", meaning her heart rate speeds up with the slightest stimulus (I think...)
We are so proud of her and her will to live! She is quite a feisty one...We are on pins and needles awaiting a good outcome overnight. She will be transferred to the Neonatal Intensive Care Unit tomorrow, pending a good result.

Thursday, March 28 (11 am)
At 6 pm yesterday, Alexis went BACK on the ventilator. Yes, I took it harder than I thought. She was doing well until about 5:15, when her breathing was just too labored, and her acid levels had risen to a point the doctors were not comfortable with.
They will try again in a few days, or as long as a week from now.
She is teaching us to be patient, that's for sure. We keep trying to keep up our good spirits, but times like these make it difficult.
We have received many emails from parents who have experienced this procedure with their own babies, and they urge us to be patient...that it takes multiple attempts sometimes. Thanks for your support :)

(2:30 pm)
At 12:30 pm we moved Alexis back to the Neonatal Intensive Care Unit (NICU). We've been told this is almost the equivalent of "one toe" out of the hospital (as opposed to a whole step). The whole move  from Pediatric Intensive Care (PICU) to NICU may be partly political, partly her progression. She is more of a respiratory case now, even though her heart needs to be strengthened to support her breathing.
She has some slight edema (fluid retention) and is still receiving diuretics. Hopefully if she progresses she will be extubated before a week from now.
This move is bitter-sweet for a couple of reasons...
The visiting hours are VERY limited and she no longer has the luxury of being in a private room. In other words, it is VERY noisy and it had an immediate effect on her blood pressure. Imagine a roomful of babies and their nurses, their equipment, bright lights, etc. Alexis will have to get used to her new home. The space around her is limited as well, so we feel like we are basically "in the way" when we visit.
We do look forward, however, to being more of a part of every-day activities like changing her diapers and holding her. For those of you parents who hate changing your child's diapers, just think of NOT being allowed to do so because of the many tubes, iv's, etc. tangling around your baby. Something as little as changing a diaper is something we greatly look forward to. The biggest joy for me will be to be able to hold her again. The last time I did was on March 11, the day of her surgery. I can count on one hand how many times I've held her.
We now have to wait until 4 pm, the next visiting hour to see her again.

Friday, March 29 (6:30 pm)
I look back at the pictures we have posted on this website and think how different she looks now! She is a little over 6 1/2 lbs. right now, but that is not necessarily a good thing. Most of it seems to be the edema (build up of fluids).  She apparently gained a bit of fluid when they tried weaning her off of the heart stimulating drug, Dibutamine. In essence, the harder her heart was working, the less her kidneys, etc. were working, causing her profusion to be less than optimal.

Today Dr. Schroeder (one of her cardiologists) informed us that they will allow until the middle of next week to see if she can be weaned from the medicine and ventilator again. She is not progressing as fast as she should be, and they expect something is causing the delay if she is not weaned by then. Their options at that point will be to insert a heart catheter, take more advanced "pictures" of a localized area that the echocardiogram can't reach, and try to solve the problem. This could mean as much as another surgery. The prospect of it is too much for me to take in right now.

Today we were allowed limited contact with her in the NICU. She has been very "jumpy", and they have tried to keep her sedated as much as possible, so as to keep her from being uncomfortable with that vent tube in her mouth/throat.  They have administered more diuretics, which seem to be working, according to her nurse. Her output so far is 7 cc's (normal output is 2-3 cc's / hour). She expects her to lose most of that fluid by tonight.
Kevin and I are trying to keep as positive as possible, having our good and bad days as well. We pray that the Lord grant us peace and the power of positive thinking as He walks with us.
This Holy weekend we wish our friends and family a happy, healthy and loving Easter.

Saturday, March 30 (6:15 pm)
This morning Dr. Schroeder (cardiologist) said he looked at the x-rays and although they did not look as good as the previous morning, he thought her "numbers" told a different story. He blamed the poor ray on poor technique or a lower wattage machine...THEN Dr. Srinivasan (surgeon) came to look at her an hour later, and decided to insert another drainage chest tube, this time on her left side.
Immediately after they drained about 30cc's (not nearly as much as the other side) she showed improvement. Her color went from a greyish pale to a rosy pink, and she appeared to be more comfortable. If only they knew what was causing this excess fluid! We're sure this is what is holding back her progress.....
It's difficult to see Alexis with her "battle scars" and tubes, etc. She did have her stitches removed today....
It seems that every day I have to sign a consent form in order for them to do another procedure....they tell you the risks involved, and you sign away...as if we had a choice.
The most difficult thing since we've moved to the NICU is seeing other mothers and fathers holding and feeding their babies....and being sent home. Our day will come soon, I hope.

Easter Sunday, March 31 (11:20 pm)
It's been a very stressful day, to say the least. This morning I came into the NICU at 9 am for the first visit, and found Alexis extubated! I felt the first twinge of happiness I've felt in a while, but at the same time fear came over me...I knew it would be a long day.
She "lasted" close to six hours last time. In PICU they had weaned her off of all medicine, not fed her, etc. They didn't handle it the same way in the NICU. She was still being fed, and was on some meds when they extubated her. She was quite agitated, as she was the first time, but the nurse in the NICU gave her sedatives in order for her not to wear herself out or make her blood pressure rise.
At regular intervals they draw blood gases. This tests for the acidity in her body, the percentage of oxygen, carbon dioxide, base excess, and many other things I am not quite sure of. We keep track of her acid levels and base excess to gage her status. If she is too acidic, or her base excess is less than -4, her blood gases are considered poor, which could most likely mean she needs to be intubated again. However, her tests have come back good for most of the day. She was off the ventilator for 14 hours the last time we saw her, at 10:30 pm. We now have to wait until the next visiting/phone call hour (12 am) to check on her. At 10:30 her blood gases showed an unusual base excess of 6.3 (give or take)...we were not sure what that meant, and neither were the nurses. She had been given a breathing treatment approximately an hour before, which could have caused the weird reading. Nonetheless, the cardiologist placed her on a C-Pap (sp?) machine, as opposed to placing her on the ventilator again...for now. This machine is similar to the prongs she has delivering oxygen through her nose, and MUCH less invasive than the ventilator tube which goes down her esophagus.
The new nurse she had for this evening shift was alarmed the first time she saw her....Alexis is very pale and "mottled" most of the time. She's been through alot, and her little chest is really heaving, working to breathe. It's not a pretty sight.
We still continue to pray that the Lord give us strength. On this holy day of resurrection, we hope that Alexis is yet another miracle.