Thank you, Alexis, for changing OUR lives for the better....we love you very much.

Tuesday, April 2 (11:45 pm)
Alexis had a somewhat stable day again...no major changes, which is good at this point. She is still on the CPAP machine..they are still slowly weaning her off of it. Although she still needs quite a bit of sedatives to keep her blood pressure from getting too high, she is doing as well as can be expected. Her liver is still slightly enlarged, so they are running several tests to find the culprit. My guess is her body is being affected from all of the medication...it's definitely a "catch 22".
Her blood gases continue to look good also. I tend to be pessimistic, and fear having this many good days in a row...for fear of a bad one right around the corner.
Another baby was sent home from the NICU today...her nurse and mother followed as they paraded her around the unit in her car seat - everyone wishing them good luck and congratulations. It must be a wonderful feeling :)

Wednesday, April 3 (12:10 am)
Alexis was taken off of the CPAP machine this morning! The nurse and doctor tried giving her a bottle with some formula this morning before we arrived, but lets just say she didn't hold it in. That was the FIRST time she had any fluid in her mouth & throat, so understandably she wasn't sure how to take it. (Not to mention how sore her esophagus is from being on the ventilator for so long). She does have some oxygen delivered through a nose canula (two little prongs in her nose).
Her newborn screening test showed that she may be lactose intolerant, but it will take nearly a week to receive the results. It seems so trivial to us at this point, but it is very important. It will determine how she will receive the proper nutrition she needs to recover and beyond. They will not allow ANY baby to leave the NICU if it does not "feed" well, and gain weight.
Alexis' blood pressure is still pretty high at times, and they are trying to find the perfect mixture of medicine to regulate it. Tonight it was too low! The mix of the dibutamine (which gives her heart the extra push) and the pressure lowering medication will have to be just right. Her nightshift nurse, Carrie, gave her a bath and mentioned that she enjoys them very much :) I was able to hold Alexis today...she fell asleep in my arms very calmly. She is barely making a few audible noises...she sounds almost like a little kitten. Her vocal chords and esophagus will take a while to recover from the ventilator tube. She's been "silent" since March 10....making faces like she is crying, but not a single sound comes out. We'll be happy to hear her little sighs, and yes, even her loud cries!
Tonight was somewhat more emotional than usual. There is always something incredible happening in the NICU, but tonight was exceptional. Just a few feet away from us, a 26 week old preemie was wheeled in....it's mother had just delivered, and they wheeled her IN HER BED to lay next to him. A baptismal service was performed while all of the nurses and family encircled this tiny baby, who was not much bigger than the palm of your hand. It brought back many memories of our OWN baptism for Alexis, days before her surgery.
I commend the doctors and nurses who have chosen to take care of our babies! Alexis' surgeon, Dr. Srinivasin, asks me every day if I've had a chance to hold Alexis. At first, I thought he was just being a doctor...knowing the importance of holding a baby and their effect on their recovery. But then he said "It makes me feel better to know you are holding her".  He said it not as her doctor, but almost as one friend to another...

Thursday, April 4 (11pm)
Alexis is still on just a 30% concentration of oxygen, delivered through her nose. She had the arterial line in her belly button removed today. It was used to accurately measure her blood  pressure. However, the risk of infection increased the longer she kept it in. It is scary to have it taken out because they now rely on a normal "cuff" to take her blood pressure at different intervals throughout the day. She no longer has it displayed on a monitor constantly.
She sleeps most of the day, without the usual amount of sedation. As soon as she was given some Tylenol she dozed off for most of the night while we visited.  She continues to be fed a special formula (instead of breast milk) through her nose tube, in case the test for lactose intolerance comes back positive. This morning she was fed with a bottle, and the nurse said she had to stop her from finishing the 15cc's (she is only allowed 10cc's right now). This is a good sign....her feeding instinct hopefully has not been affected. We feel very sorry for her...that formula tastes and smells horrible! She continues to breathe quite fast, and a little labored. Unfortunately, her labored breathing has caused her diaphragm to push up on her breast bone, causing it to poke out somewhat. It looks like a small knot in the center of her chest. The surgeon said it is a strictly cosmetic problem, which could possibly be fixed later - or she may grow out of it.  She's still my perfect little baby girl :)

Friday, April 5 (11:15 pm)
Happy 1 month birthday Alexis!!! It's hard to believe she is already one month, but on the other hand, it feels like she should be much older! It has been one of those days...with ups and downs. This afternoon she was taken off of the oxygen, since she was at 24 percent (room air is 21%), but had to be put back on at 10 pm after her rate dropped below 90 on the monitor. I am disappointed, but trying to keep optimisitic. After all, she has come so far since she was taken off of the ventilator!
Another good bit of news is that she has been moved from the"heater" bed to another bassinet-like bed. This came about because she has been able to sustain a normal body temperature on her own. We pray that this, at least continues through the night and beyond. If so, I can finally dress our baby in at least a t-shirt :)
The combination of this move and being off of the oxygen was such a good feeling, while it lasted. She was so close....

Saturday, April 6 (11 pm)
Alexis continues to receive a little help from the oxygen canula in her nose. I finally was able to put a t-shirt on her...her first piece of clothing :) She is still being fed through her nose tube, but the nurses also give her small amounts of formula through a bottle, in order for her to adjust to it. She is still working on keeping it down.
One of the cardiologists (Dr. Bloom) said that the echocardiogram they did today showed that her heart was working better. It was good news, considering she has been weaned off of the dobutamine.
She has been sleeping mostly, and seems to enjoy mommy and daddy holding her :) We still wait to hear her little voice again....

Sunday, April 7 (11 pm)
Alexis slept most of the day today...she looks tired most of the time. She continues to get a little help from the oxygen...she's still at about 28% oxygen. We get to hold her most of the day now, which helps a lot :) Kevin was able to try to bottle feed her for the first time today. She took in about 4cc's (4 ml), which is not much, but she's got to start somewhere!  She is on continuous feed through the nose, so this bottle feeding is just practice for her. We asked the nurse tonight what would happen if she could not be weaned off of the oxygen any time soon, and she mentioned that some babies are sent home with oxygen and feeding tubes. This doesn't necessarily mean Alexis will too, but there have been cases of it.

Monday, April 8
Alexis is getting 3 different types of feedings...one through the nasal line, one bolus feeding and a small amount via the bottle twice a day. So far she has not kept alot of the bolus feedings down, and she is hesitant to take the bottle. The goal is for her to stretch her little stomach in order for it to learn to accept food faster and in larger amounts.
The NICU doctor (Dr. Molina) said that pretty much the only thing keeping her in the hospital is getting her to gain weight and eat.
It sounds simple, but it is a very daunting process. It's especially hard to see her spit up (that's a nice way of putting it). She still seems tired and continues to be on oxygen.
We attended a CPR class for "high risk" babies. It was a really big dose of reality and how scary it will be to bring her home, no matter how anxious we are to do so. It really is beginning to sink in...that this will be a scary and difficult time with a very sick baby.

Tuesday, April 9
Alexis looked quite tired today. Apparently the doctors agreed because they did a sonogram to rule out any chance of fluid build up around her lungs. There was some slight fluid build up, but nothing that would warrant her breathing at such a fast and labored rate, according to the cardiologist. Her rates are going to the 100's when they should be in the 40-50 range. Her blood oxygen levels were in the low 90's though they should be in the mid to high levels (and she is still receiving 30% oxygen through the nasal canula). Her color was more pale than yesterday and she was mottled, signaling poor profusion. Her heart function, however seems to be stable.
All of these signs point to the fact that she is not feeling well, but the doctors are not really sure why. Nothing jumps out at them yet. As of right now, we are waiting for the results of a couple of lab tests to see if she has an infection of some sort. As a precaution, the doctor "on call" tonight started an IV of antibiotics - Vancomgcin every 12 hours and Cefotaxime every 8 hours (I hate the IV's they put in her head). It was a difficult day for both Kevin and me, since this was his first day back at work - and it was NOT one of those uneventful days.
Dr. Sirinivasan (her surgeon) came by to see her earlier today and suggested she receive some sort of pain medication. She has not received any for at least a week - not even Tylenol in the past few days. After she received a small dose of morphine, her rapid breathing slowed down and she was comfortable enough to have a good nap (who wouldn't?!). This did not last long, however.
This evening I was able to feed her 15 cc's (15 ml) of milk, which she quickly sucked down....a good sign. A not-so-good sign...she spit most of it up. Slowly but surely :)

Wednesday, April 10
The preliminary bloodwork shows no signs of infection. The urinalysis is still pending. Her ultrasound showed that her lungs looked a lot better than yesterday, as far as fluid retention. Alexis is beginning to look and act more like a baby than a newborn as the days go by. In the past couple of days she has really been demanding her pacifier! She continues to take the bottle really well. This morning I fed her about 30 cc's (1 oz) which she vigorously drank in no time...a good sign that whatever is holding her back must not be bothering her too much, since she has an appetite. If she continues to take the bottle well, she will soon have the feeding tube removed from her nose. Her oxygen has been increased, since her saturation is still in the low 90's. We still do not know the cause.

Thursday, April 11
Today marks 4 weeks since Alexis had her surgery.  This morning I was awoken by the phone ringing.  Dr.Molina called asking for my consent for Alexis to have a spinal tap. This was not how I wanted to wake up! It is really disturbing to hear that first thing in the morning, along with the complications involved, etc.  They are trying to figure out where there may be an infection, since she has  had a high fever on and off for several days. This morning it was 102.5 degrees.  We will get the results of the spinal tap tomorrow.
The bloodwork and urinalysis showed no apparent signs of infection so far. The doctors are very puzzled and worried...they don't know what is keeping her from progressing. If she continues to fluctuate, they may attempt the heart catheter. What is most puzzling is that her cardiologist said her x-ray was the best it has been, as far as clarity from fluid build up. She continues to take the bottle very well. She is now strictly on bottle feeding every 3 hours.

The most difficult part of the day is seeing Alexis bruised from all of the different places they tried finding a vein for an IV. I'm not exaggerating when I say there are close to 30 spots from head to toe. The diuretic they have been giving her has dehydrated her to the point where her skin does not have enough elasticity or tissue behind it to hold the vein in place long enough to poke it.  They struggled and finally decided to place a catheter in the vein, which was no small feat. It took them over 2 hours to complete this.....unfortunately when we left tonight, the line would not flush (it would not allow any fluid to pass through), and they may have to try another IV. I am also afraid for the results to come back negative because that means they don't know what to treat. I suppose I understand why doctors "practice" medicine. Unfortunatley, my baby is starting to feel like a guinea pig.
I keep praying that the Lord gives us strength to be there for her, and that He blesses her with the stregth to keep fighting.

Friday, April 12 (3:30 pm)
I don't like to "jinx" myself, but Alexis looks better today than yesterday :)
Her spinal tap test came back negative so far. Also, the test for her lactose intolerance is not completely positive. We will try to give her breast milk for 5 days and test her reaction. Along with this good news, there has to be some bad news....her kidneys have begun to take a hit from the medication. The nephrologist said that the medicines which are helping her heart, and mostly her diuretics are dehydrating her to the point where her kidneys are paying for it. This is really a "Catch 22", and they are not quite sure what to do to find a good balance. It's frustrating, to say the least.
We are also looking at the possibility of her going home on oxygen more and more. She continues to have trouble coming off of it.
Her surgeon also told me today that he is looking towards 6 months to a year before her next surgery to replace the conduit from her right valve to the pulmonary artery. More specifically, he would like her to weigh between 10-14 pounds before he attempts to perform the surgery.
Alexis still weighs 5 lbs 11.5 oz, but she somehow looks bigger! Maybe it's the transition from newborn to 1 month old, and the way her little face has filled out. We will soon have new pictures of her. Some pictures show the harsh reality of what she has experienced...more than the photos we had to begin with. Kevin and I wanted to put the cutest photos on-line....but also felt that our family and friends should be able to see what we've seen.

Saturday, April 13
This morning Alexis was all dressed up, but nowhere to go.  The nurses had fun with her the night before playing dress-up. She was in a cute onesie, complete with matching bow (pebbles style) and cute socks. Even her blankets were coordinating :) It was so nice to see her look like a normal baby....I know I love her because she is my baby, but the nurses are always so drawn to her! It must be her beautiful eyes.
Her day was pretty uneventful until this evening. Her temperature rose to 102.5 again, and she was breathing pretty heavily.  After her 11 pm feeding the nurse said that she is now calm and sleeping, breathing more slowly.
They continue to run a gazillion tests on her looking for infection, but so far there is no sign of one except for her fever. I am convinced that it is a result of the dehydration from the diuretics.
Her ultrasound and x rays showed much improvement as far as fluid build up. More specifically, there seems to be hardly any!
She is being fed 45-50 ml of milk, but it doesn't seem to be enough. She acts very hungry after the feedings, but they will not give her any more for fear of more build up of fluid around the lungs. So what is worse, a hungry, thirsty baby or the opposite? It's hard to see, that's for sure.

Sunday, April 14
Tests, tests and more tests...that's the extent of Alexis' days. I can't even keep up any more. The one that stands out to me right now is a test for possible kidney infection. That should come back in the morning. She is still eating really well, a good sign that whatever lurks is not bothering her too much.
She slept most of the day today. I'm sure all of these tests and fever are wearing her out. I'm wearing out myself :)
Alexis still wears her bow (pebbles style) and no one can walk past her bed without commenting how cute she looks :)

Tuesday, April 16
No tests have come back positive as of yet. (Her cultures remain negative) Yesterday they did an ultrasound of the abdomen, sternum and head....all came back normal. Today the nephrologist said that perhaps the hit her kidneys were thought to have taken were indeed due to the medicine....and that now that her dosages were decreased her kidney chemistry looks a lot better. They're between a rock and a hard place, since the medicine she needs for her heart is potentially dangerous for her renal function.....the cardiologist quickly pointed out to him (jokingly) that the heart is more important than the kidneys.
This morning she had us a little worried...she was very lethargic - not at all like herself. She has started to slow down on her feeding. This morning she was sleeping so much we could not even entice her to eat! The strange part is that now that her white blood cell count is lower...down to 29 from 40 two days ago, she has started acting more tired and eating a little less.  She was eating better and more active when her count was 40...even though there was probably an infection b/c normal count is 5-21!
The nurse elected to put in a feeding tube for her 2 pm feeding (she was so sleepy she would not eat), which must have awoken her...she seemed to know we meant business and decided to take her feeding by bottle the rest of the day instead of finishing it through a tube in her nose!
Her temperature has been too low now...her body is so tired that it can't even sustain a normal temp.
As I said earlier, she was magically awake after the nose feeding tube was inserted, and later removed. This evening she took almost her whole bottle..lacking about 5 to 10 ml. BUT she did not hold it in. They started her back on the Reglan, which prevents her reflux, and hopefully it will kick in soon.

Wednesday, April 17
Alexis continues to eat really slowly. She seems to have her days and nights mixed up! She is very sleepy, which could be a side effect of one of the MANY medications she is taking. Today she began her first dose of Beta Blockers medicine. The desired effect is to relieve her congestive heart failure, and give her body more "reserve". Apparently this beta blocker is almost a miracle drug which has gone so far as to eliminate the need for heart transplants in patients who were in need of one. Only one type of beta blocker has been approved by the FDA - it has not been widely used in babies, but adults claim it is a miracle drug.
The Beta Blocker essentially decreases the adrenaline response, which helps her heart. The dosage will be slowly uptitrated (increased) until the full dose is reached in roughly 3 months.  Hopefully Alexis responds well to this.
Her white cell count was down to 17 today...good news!
We still await the results of the blood cultures for 3 more days to make sure nothing "grows", showing signs of infection. If nothing shows up, she will be taken off of the antibiotics and monitored for response.
The galactosemia test was sent out today, and we should receive a result in 7-10 days. In the meantime she is back on pregestamil milk in case the results show she is galactosemic. We pray that she isn't!
On one hand it's hard to believe we are nearing the two month mark, but on another hand it feels like we have been here for years.....
Two more babies with Truncus Arteriosis were born recently. It's supposed to be a very rare defect, but they say these things come in three's. I spoke to the mother of a baby born with Truncus to try to explain what we have gone through. The really odd thing is that her name is Connie (my mother's name), and her baby's name is Emily (my sister's name). She had no idea her baby would be born with this defect either.  Every baby is different, and her baby has only one defect as opposed to the multiple ones Alexis had "repaired". It's difficult to explain the nightmare we have and still are enduring. However, the best therapy for parents in the NICU is to know others are there to help you, and better yet...their babies woke up from difficult surgeries as well.  We pray for each other - brought together by a mixture of a joyous occasion (the birth of a child), and a painful situation (seeing your baby enduring things no baby should).
I have good days and bad days but God has continued to pull us through. I ask for more strength and positive thinking, and He delivers. I never doubt Him....better yet, I completely rely on Him. That's how it should be :)

Thursday, April 18
Today Alexis continued to have trouble keeping a temperature above 97. The doctors still don't know why, but they feel it may be due to her heart condition. She's never "by the book"! Her liver was significantly less enlarged than yesterday. Her white blood cell count was up slightly to 19 from 17 yesterday, but still within normal range. Her cultures continue to run negative.
Hopefully she will be off of the antibiotics by Tuesday if no infection continues to show.
She began the day eating pretty slowly, but sped up slightly during the rest of the day. She still spits up and even more than spits up her food. Poor thing...she is eating the yucky pregestamil milk. Her galactosemia test results are still pending.

Friday - Saturday, April 19 & 20
We were told on Thursday that Alexis may get to go home on Wednesday. I didn't include it in the update, and still hesitate to do so today because I'm becoming quite superstitious! She has her sleep & eating schedule mixed up still. It's a little harder to get her to eat, though at night she does a little better with some prodding.
The past few days the nurses have allowed us to practive drawing up her medicines. As of right now she will be going home on 10 medications....28 doses per day! It will be very overwhelming, but we will learn to adjust, I'm sure.
She remains on oxygen, and will go home with it as well.
I pray that it WILL be God's will to have her home next week. In the meantime, we're on pins and needles....very anxious.

Sunday, April 21
It still is quite a chore trying to get Alexis to eat during the day. She continued to be very lethargic, not waking up easily. Her nurse, Suzanne was getting worried about her. She also has gained roughly 7 oz in two days, which seems like quite a lot. We hope that tomorrow's echocardiogram reveals some improvement in heart function, and that no fluid build up shows. She has been on the beta blocker medication for nearly a week, and it will be increased again on Friday.  This medication has not been widely used in the NICU and the nurses are learning themselves what to look for as far as side effects. The cardiologist has two other patients on it...a 4 month old and a teenager who have shown great improvement. We hope to see the same or better.
Tonight Alexis was very alert. Her night nurse, Rose, could not believe that she had been as lethargic as Suzanne had mentioned! She ate almost as well as she used to...finishing about 45cc's in less than 30 minutes...She also received her immunizations, which could explain her fussiness later in the evening. We hope they have no adverse effect on her. It helped me to see her bright-eyed this evening....it's been very rough to see her somewhat regress when we are so close to maybe going home :)

Monday, April 22
We have not received any news regarding the echocardiogram performed this morning, but if it was bad news, we would have heard already I suppose. As far as Dr. Molina knows, we are still on track to leave on Wednesday, "rooming in" tomorrow night at the hospital.
Kevin and I will spend the night with her and give all of her medications, etc. just as if we were at home.
It's been very stressful trying to get all of the details in order as far as coordinating the oxygen people to set up at home before we get there, filling all 10 of her medications and knowing how to give them to her...etc.
She continues to be very sleepy (perhaps because of the beta blocker) and has difficulty eating because of it. I had to learn to do something very difficult....how to place a feeding tube through her nose and into her stomach. It was so hard to do that to your baby! Between making sure I get the correct dosages for each medicine and checking with a stethescope to make sure her feeding tube is in place, it's becoming very real how much our life will change. At least one of her medications can be lethal if I give her the wrong dosage! No pressure....right?!
I asked God to allow us the privilege to take care of Alexis....not to take her from us. He has given us that opportunity, and I am so thankful, no matter how different our life will seem.  Because she is our first child, it's almost as if this is the normal way to take care of a baby.... They say He does not give you more than you can handle.   This will be a true test.

Friday, April 26
WE ARE HOME! Actually, we arrived on Wednesday at around 5pm. Thank you to our friends who surprised us with a cute sign welcoming us home :) We apologize for not updating, but to say it has been a whirlwind is an understatement! The past couple of nights we have been trying to organize her medications...we are literally up around the clock. Every 3 hours she eats and takes medicines ranging from plain vegetable oil (to fatten her up) to the beta blocker. It begins at 8 am, then 11 am, 2 pm, 5 pm, 8 pm, 11 pm, 2 am, 5 am...you get the idea! The hardest part has been trying to sleep! So far we average 2 hours between Kevin and me. Our in-laws are also here to help us, but we will have to adjust to being on our own pretty soon!
This morning we took her to her first pediatric visit in nearby New Braunfels. It was at 8 am, right at the time of her feeding and medicines, so coordinating that was a challenge. All of her doctors' visits will be early in the morning so that she is at minimum contact with other children and their potential viruses. She will return once a week for an undetermined amount of time. They are watching her weight gain closely, hoping she will catch up. Right now she weighs 6 lbs. 7 oz! If she does not gain adequately they are considering placing her on a continuous feed through the night. We have already scheduled a follow up visit with the cardiologist in San Antonio....two weeks from now. She will visit the nephrologist near the end o f the month. Whew!!
The portable oxygen unit is a little hard to handle, and kind of dangerous. It's liquid oxygen, so the unit must remain upright at all times. Try managing THAT in a moving car...nearly impossible. We are trying to coordinate either Kevin or my mother in law to go with me to the visits. Needless to say, we will not be taking her outside of the house for a while (maybe months) besides for doctors' visits.
We do have a home health nurse coming a couple of times a week to check on her vitals, etc. Yesterday was her first visit and she will return tomorrow.
Oddly enough, our long stay at the hospital seems like a blur. I am slowly beginning to allow everything to sink in.