Adventure Time- Sunday Afternoon to Tuesday Morning

We left Melbourne around 3:30pm on Sunday and arrived at The Ronald Mcdonald House in St. Petersburg around 6pm. We checked in and went to dinner with some friends, in the area, around 7. We had a pretty uneventful night, got up around 4:15am, and got to the hospital around 5:15.

Ronald Mcdonald House West

After completing registration, we went up to the PICU for some testing. They started an IV, took some blood and nasal swabs, did a chest xray and EKG. This all took about 2 hours and during that time, Lu did great. She did not like the tests but she slept and played in between. We spoke to the anesthesiologist who had, incidentally, had open heart surgery himself as well.

Registration

Waiting to take tests

She loved eating my visitors tag.

What a fashionable gown. She was pretty happy even though she hadn't eaten anything in a while.

Sleeping during the pre-op EKG

After a lot of waiting, the nurse took her away for surgery. She was sleeping when we handed her off so that made it a little easier. It would have broken my heart to see her scared or sad.

My in-laws are here with us but my mom had to stay in Melbourne since my dad is having some medical procedures this week. It is a lot of help to have their support and my mom is being updated through phone and Facebook.

The wait during surgery was easier than I thought it would be. I slept a little bit, we ate lunch, and hung out in the family waiting room. The nurses updated us every time something significant was happening. The time went by pretty quickly and we all knew she was in great hands.

In Lu's open-heart surgery , the surgeon makes a cut in the chest and a heart-lung machine is used to maintain circulation while he closes the hole. The ASD is closed by sewing a patch of pericardium tissue over the defect.  Eventually, the tissue of the heart heals over the patch, and by 6 months after the surgery, the hole will be completely covered with tissue.

After surgery, which lasted about 3 hours, we talked to the surgeon. He actually had to close up 2 large holes in the atrial septum called the ostium secundum and the ostium primum as well as a small PDA, which they tied off. He explained to us that, although the next few days would be intense, children tend to heal much quicker than adults and she will feel better than ever after she has recovered. Because of her ASD, the blood flow in her heart and to her lungs has been very inefficient for her entire life. The holes have prevented the heart from operating correctly and the non-oxygenated blood has mixed with the oxygenated blood which has made her lungs have to work harder as well. Normally the non-oxygenated, or blue, blood in the heart travels from the right side of the heart, through the lungs, turns to oxygenated, or red, blood then travels to the left side of the heart and throughout the body and back. But with most CHDs the red and blue blood gets mixed together and blood and fluid can collect in the lungs and other organs and back and forth between both sides of the heart, causing several problems, as you can probably imagine (see diagram). This has also caused the right side of her heart to be 2-3 times larger than normal and the left side to be 2-3 times smaller. As you can imagine, this has caused every exertion of energy, from eating and playing, to even breathing, to be like running a marathon. But after her repair, the proportions of the right and left sides of her heart were closer to normal and the blood flow was normal.

She was moved to the Cardiovascular Intensive Care Unit (CVICU) around 2pm and we got to see her shortly after. We were prepared, ahead of time, for what we would see but it was still pretty hard to see her hooked up to so many tubes and machines. They sometimes extubate in the operating room but Lu was not breathing well enough on her own, then, so she had a breathing tube (intubation). She also had a chest tube (to drain fluid and blood from her surgical area) and temporary pacing wires, several IVs, a pulse oximeter (to read how much oxygen is in her blood), a catheter, and a few patches and wires that recorded her vitals and O2 stats. She was very swollen, especially on her face so she kind of looked like a different baby. She looked pretty comfortable and would open her eyes for a few seconds here and there and she would grimace and try to cry, which was hard to see, especially since she couldn't make any noises due to the breathing tube in her throat. After she started to wake up a little more, they attached her arms to the bed with arm restraints to prevent her from pulling at the breathing tube. They slowly lowered the level of oxygen going through the tube until she was breathing well on her own. They removed her breathing tube around 9 or 10pm and replaced it with a nasal cannula.

A few hours after surgery

We all left after 10pm since she was still out from the anesthesia and pain meds. I had a severe headache so we chose to get some sleep so we could be able to care for her better when she was more alert. We got a phone call a little after midnight, which scared me pretty bad. The nurse was just letting us know that Lu was having trouble breathing on her own so they gave her a CPAP mask (which is just a mask that forces air in her nose) and tweaked her pain meds. They also inserted a NG tube (Nasogastric tube- a small tube that is inserted through the nostril into her stomach to remove air. It is also used for tube feedings).

Tuesday (Post-op, Day 1):

We got to the hospital in the morning as they were taking the CPAP off, which upset her a lot. Her numbers were good so they are slowly removing things to see how she tolerates it. They have taken out her catheter and NG tube and removed her brain oxygen monitor (a patch on her forehead). She is still receiving morphine but less often. She seems pretty comfortable and is trying to sleep but you can tell she is hungry and wants to roll over onto her side or stomach.

If she continues to do well, they will let us bottle feed her this afternoon, which should make her very happy. Right now, we are just letting he rest and hanging out. I will try to update the blog tomorrow night.

No more breathing tube or CPAP

Little Lu's Crew

Little Lu's Crew will be walking Feb. 26 in the 1st Annual It's My Heart South Florida Chapter Congenital Heart Defect Awareness Fun Walk/Run! 

Join us in raising money for Congenital Heart Defects (CHD) by joining Lu's team or donating to help us reach our team goal! ♥ 

 Follow this LINK!

A Bump in the Road

We were all set to leave, yesterday, for St. Petersburg (Lu's surgery pre-admission testing was supposed to be this morning at 9am and her surgery was set for tomorrow morning) but after calling the nurse at the surgeon's office yesterday morning, they recommended we change the date since Lu had been sick the previous week.

It was pretty tough news to hear, not just because we were all packed and ready to go, but also because we had been very excited to have a healthy baby home for the holidays and ready to start the new year as a normal family. I have also been concerned about her health because she hasn't gained weight in about a month so I know that is a sign that she needs to have the surgery soon. We know we need to do whatever we can to reduce the risks of anesthesia so we have come to terms with the fact that this is what is best for Lu.

Her new surgery date is set for January 3rd.

Since we will be home for the next few weeks after all, I have put together a Holiday Gift Giving Event to help sick children, who have to spend their holidays in the hospital, have a nice Christmas. I will be accepting new toys and gifts at my house on Tuesday, 12/21 and will be delivering them to the Holmes Regional on the 22nd. I will also be accepting donations for gifts through paypal now through December 21st. You can use my email (JunebugFL82@aol.com) on the paypal site or you can visit Lu's Facebook page: Little Lu Favero and click on the Holiday Gift Giving Donations tab at the top of the page.

Here is a link to the Facebook event: Holiday Gift Giving Event

Thank you and Happy Holidays!

Pulse Oximetry Testing Can Save Lives

From: http://perfectbrokenhearts.wordpress.com/category/chd-research/pulse-ox-testing/

Approximately 36,000 babies are born each year with a CHD.  (American Heart Association Website). Less than 10% of CHD’s are diagnosed before birth.

This year approximately 4,000 babies will not live to see their first birthday because of Congenital Heart Defects. (Children’s Heart Foundation)

Most people are unaware that Congenital Heart Defects (CHDs) are the most common birth defect in America, affecting approximately one in one hundred, or 40,000 newborns each year. CHDs are responsible for one third of all birth defect-related deaths and sadly 20 percent of children who make it through birth will not survive past their first birthday. Although a child is born every 15 minutes with a CHD, research continues to be grossly under-funded in America. Of every dollar the government spends on medical funding, only a fraction of a penny is directed toward congenital heart defect research. (Children’s Heart Foundation)

Click this LINK to read more about this simple and non invasive test that can help save the lives of so many babies.

Lu's Firsts

Since my last update, Lu has had a lot of firsts. She celebrated her first Thanksgiving, had her first professional Christmas photo shoot (besides the homemade one with mommy), met Santa Clause, and cut her first tooth! She also caught her first cold but it doesn't seem to be bad at all.

Thanksgiving was a blast. We did the usual huge family dinner at Yaya's house where Lu tried her first banana baby food and had a few small tastes of sweet potato casserole, which she loved! She sat in her excersaucer playing and talking while we all ate and talked about the last Thanksgiving where we announced my pregnancy via wrapped framed ultrasound photo. It was a fantastic day and we can't wait for next year when she can sit at the table, with a healthy heart, and eat all of the yummy food.

The Big Announcement- Thanksgiving 2009

 

Lu's First Professional Photo Shoot

Lu and Sailor Meet Santa

BFFs- Sailor and Lucianna

Lu loved Santa!

Help a sick child have a nice holiday.

With Lu's surgery being set for December 15th, I started thinking about all the children that will have to spend the holidays in the hospital. We are hoping to be home before Christmas but there are many children who will not be able to be home to enjoy the holidays.

There are many things you can do to help those children have a happy holiday. For instance, you can buy new toys and donate them to your local hospital or stuff some stockings with fun toys and games for the kids to enjoy during their stay in the hospital. Craft kits, coloring books, games, and other activity based gifts are the most beneficial since it can be very boring and uncomfortable for a child who has to stay in bed and those sorts of fun projects offer a distraction from any pain they may be in as well. There are also play rooms on many pediatric floors so they are in need of new toys year round.

While Lu was in the NICU at HRMC, they used several homemade items like quilts, knitted blankets, hats, and booties. They also had cute homemade name plates for the isolettes and cribs, made from inexpensive craft store materials (this would be a cute  idea for kids to help with).

Her is a link with information on how to donate gifts to All Children's Hospital:
http://www.allkids.org/body.cfm?id=205

If you would like me to deliver the gifts when we are over there, let me know. We are bringing 3 cars over so there will be plenty of room!

There are also several local hospitals that could use your help:
http://hospitals.local-data.com/county/florida-fl/brevard/849/

Thanks Everyone and Happy Holidays!

Almost There

Today we set the date for Lu's surgery. It will be on December 15th at All Children's Hospital in St. Petersburg. It is about 3 hours from our home so we will probably have to go there on the 13th because Lu has her pre-admission testing on the 14th. Recovery usually takes about a week so hopefully she will be well by Christmas.

While at the cardiologist's, on Wednesday, she was given another echo which revealed Patent Ductus Arteriosus (PDA). This isn't a serious problem and doesn't change her treatment at all. They will, most likely, just close it up during her surgery next month.

In the weeks since my last post, Lu has grown so much. Her weight gain is still slow but she is at almost 12 lbs. now. She has been rolling over all over the place and loves to hang out in her new walker/exerciser. She has been doing a lot better since her stay in FL Hospital and hasn't really vomited much at all. She is her usual smiley, talkative, and giggly self and we enjoy every second of her cute and happy personality.

Today I made an appointment to get her holiday portraits done but then decided to try them on my own (with my iPhone, LOL). They came out great but we still may keep her appointment to see if we can get some more creative shots of her, since she would only sit for my photo session for about 10 minutes.

I will keep the blog updated, especially when she is in St. Petersburg. Thanks again for all of your support and encouragement!

Lu's First Halloween

Lu's First Holiday Photos

What an angel!

Our First "Chilly" Day

She can now, somehow, maneuver herself out of this seat.

This exerciser is her favorite place to play!

My Little Ham

Lu is 3 months!

Our Little Lu turned 3 months yesterday. Her eating and weight gain has been where we like it for the last week (up to 11 lbs. now and eating well) and WIC approved my doctors request for her special, and very expensive, formula.

I am so grateful for all of the help we have received from Medicaid, Children's Medical Services, WIC, DCF, and our community. Our wonderful friends, family, and people that we have never met have donated their time, energy, and money to help our family get through this tough time and I am so thankful that these generous gifts have allowed me to stay home and take care of my beautiful Lu.

I also have to specifically thank my mom and my husband's parents for all their support and encouragement and my husband who sacrifices so much of his time at work in order to allow me to help our daughter heal. Lu is so lucky to have such a wonderful family by her side and it makes my job so much easier to know that they have my back as well.

Most importantly, I am grateful for my baby girl, Lucianna. She is the most amazing, intelligent, joyful, and strong baby. Her smile lights up my world and makes everyday a blessing. I am so excited to get the opportunity to watch her grow and thrive. There is nothing in this world more valuable than our love.

Here's to you, Lu!!! I LOVE YOU!

The Rollercoaster Continues

A few days after my last entry, Lu's health went downhill. She started throwing up 3-4 times a day, and not like baby throw-up. This was intense vomiting. She would gag, turn red, let out a huge belching noise, and then puke up the entire contents of her stomach. She would then try and catch her breath, cry a little, swallow a few times, and then smile (very Lu and very misleading). The vomiting didn't just scare the crap out of me, inflict pain on my poor baby, and make her lose weight. It also concerned me, and her doctors, because we were not sure if she was absorbing all of her medications. She has vomited like this before (something we thought was a side effect of all her meds and reflux, which she was on Zantac for) but not very often. She was now doing it after almost every feeding.

After the vomiting worsened, she also slowly started eating less volume each day so I knew her weight would be significantly less the next time we saw the doctor. We saw her pediatrician on the 20th (the day before she started vomiting) and she weighed 10lbs.11oz. By the 24th, she had lost an ounce and was very sick looking. I went to the pediatrician and demanded a referral to a GI specialist and ultrasound of her stomach. That same day we went to the hospital for the ultrasound. I had to starve her for a few hours but it was no big deal since she didn't really want to eat anyway. The test was on a Friday and by Monday she has lost another 7 ounces. The results of the ultrasound came back as "highly suspicious of pyloric stenosis" which meant immediate surgery. Pyloric stenosis is when the sphincter muscle, that allows the stomach to empty into the small intestine, is too tight. This lack of gastric emptying results in vomiting, loss of appetite, weight loss, and dehydration. Normally a surgery like that could be performed locally and pretty simply but since Lu has a heart condition, we were told to go to the ER at the Florida Hospital Walt Disney Pavilion in Orlando. On the way over, I was pretty scared. A part of me was relieved that we had found an answer and a part of me was very overwhelmed at the thought of Lu having surgery with her heart condition. Lu slept almost the entire way so my mind wandered a little. Could this really be a separate issue? I found myself thinking about how well I had taken care of myself before, during, and after my pregnancy and wondered why my daughter had so many serious health problems. I tried to stay positive as I stroked Lu's hand and watched her smile in her sleep.

After spending about an hour in the ER, the doctor came back and informed us that their radiologist had looked at her ultrasound and did not find pyloric stenosis. A feeling of relief overtook me but I also felt discouraged that our answer was taken away. Why was she so sick all of a sudden? Was it her heart? Her reflux? A number of possibilities ran through my head. I knew she was in pain after eating and I knew she was smart enough to correlate her pain with her bottle. Was her lack of interest in eating a behavioral issue now? But what about the vomiting?

They took some of Lu's blood and started IV fluids (something that took way too long and really upset us both). One of the tests they ran on her blood was to see her Digoxin level (her most recent heart med). It came back pretty high, something I don't fully understand still, but it has something to do with absorption and the amount of food she was getting. They admitted her to the Pediatric Cardiac Unit that night and scheduled an Upper GI Series for the next day.

The Upper GI went okay. They wouldn't allow Lu to eat for four hours, again not an issue, but when they gave her the bottle of barium, they only let her drink less than an ounce, which teased her and upset her so she cried and kicked a lot. Three nurses had to hold her down, which upset her even more. They got a good picture of the barium coming back up the esophagus (confirming the reflux we had suspected) and it also went right through the pylorus (totally ruling out pyloric stenosis). The radiologist couldn't document normal bowel function because Lu was moving around too much to get a good picture but she was almost certain that there were no problems there. So the result was reflux. Now it was time to develop a plan.

We saw the GI Specialist and he increased her Zantac to 3x a day instead of twice and came up with a good feeding regime to test out during our last night at the hospital. They gave us some Enfamil 24 calorie premixed formula and we added 1/2 tsp of cereal per ounce to thicken it up and give her more calories. We tried it overnight and Lu loved it. She also did not throw up at all. It smelled really yummy and I thought the taste might get her over her aversion to eating. We also decided not to put her meds in her bottles so that they would not ruin the taste for her and make her associate bad taste with eating. All this was encouraging except for the the fact that you could only buy this formula online and it was very expensive (48, 2 oz. bottles costs around $120 plus shipping). Afraid to ruin the good thing we had going, we forked over the cash and bought enough for about 2 weeks if we mix it with breast milk. The goal is to slowly ween her off of the formula that she loves and back onto a fortified version of my breast milk (we mix 1 tsp of powdered formula per 3 oz. breast milk to add calories). The nutritionist gave us a recipe on how to make normal powdered formula into the same 24 calorie formula that they gave us and insisted it was exactly the same but it looked and smelled different plus this was the exact recipe that we were following before when she was throwing up. 

We are going to follow up with the GI and if this plan is not working we will discuss other causes of her problems. There is also the possibility of a protein or lactose allergy but so far she is tolerating the formula and breast milk pretty well.

We are also following up with her cardiologist soon. I am still unsure about the role her high Digoxin level played in the whole mess. They skipped a few doses while in the hospital but then started her back up on the normal dosage when she was discharged. Another concern I have is that the admitting nurse accidentally wrote that her prescribed dose of Digoxin was 1.2mL instead of 0.5mL. We did not discover this mistake until 5 minutes before we were discharged and although we let the doctor know of the mistake, I still fear that this mistake could have affected how the doctors would have treated her while in the hospital. I wonder if they would have lowered her dosage more at discharge so I will bring it up to the cardiologist. 

It has only been less than 2 days since she was discharged so we are still monitoring her progress but she weighed in at 10lbs.8oz. today which is a 5oz. increase in 3 days and she has not vomited since the night before we brought her to the hospital. Her ounces per day has increased from about 8 oz. a day (when she was at her worst) to about  13-14 oz. a day. Our goal is around 18oz. a day, which is lower than normal for a baby her age but made up for since we are on a 24 calorie/ounce formula instead of 20 and adding cereal to her bottles. Hopefully we can reach that goal after her Zantac dosage has kicked in.

Fingers crossed!

All smiles in the ER

Tuckered out after the IV

PCU

Look at that pouty face. :(

Charming EVERYONE in the building!!!

GI Test

 Finally eating!!!

On our way back from Orlando

Our First Meeting With The Cardiothoracic Surgeon

Yesterday we went to Orlando for a meeting with Lu's Cardiothoracic Surgeon, Dr. Q. It was Lu's first road trip, and she slept almost the entire way. Along with Lu, myself, and my husband, my mom and in-laws also attended the meeting. When the surgeon walked in, I think he was surprised at all the people that were there and laughed as he moved through the small room and stood in the corner so we could all see him.

They took her weight and she was 11 lbs.! That is a 7 oz. increase in 3 days! She hasn't been eating a normal volume for a baby of her age and size but since we are adding formula and cereal to the breast milk it seems to be giving her enough calories. That made me feel a lot better about the volume she is taking in and she is having plenty of wet and dirty diapers so I think we have finally found the feeding regimen that is right for her for now.

As for the actual  meeting, we learned a lot about our goals leading up to the surgery and why it is beneficial for Lu to be a little older during her surgery. He explained that the heart tissue in an older baby is tougher than that of a younger baby and it makes the repair a lot easier. They usually want to wait until 3-6 months of age but commonly do the surgery around 4-5 months. The weight issue comes in because, although we want to get her past a certain age for the repair, we also want her to be growing and thriving during the wait. If she doesn't grow properly, there are a few options that are available to us. For instance, if she is losing weight or not gaining over a lengthy period of time, we can feed her through a tube, either at home or in the hospital. Another option we have is to go ahead with the surgery sooner. It is not the ideal time frame to to the repair but it is very possible and is done frequently. But since she showed significant growth during the last week, we will just continue on the current feeding schedule and hope she continues to thrive.

Lu will be 3 months in a little more than 2 weeks and is in about the 60th percentile for weight and height so we anticipate having the surgery sometime in the middle to late November in Tampa.

Overall, it was a promising meeting and everyone loved the surgeon. He was very informative and gave us a lot of confidence in the procedure and surgical team.

We will continue to track her progress and weight twice a week at the pediatrician's office and every 3 weeks at the cardiologist's office. 

On our way to Orlando

11lbs!!!

We took advantage of our trip and visited the FL Mall, after the meeting, where Lu found a sweet hat.

The Diagnosis And Progress Toward Recovery

The memories of the hours after Lu was born are hazy for me. She arrived at almost 4am and we didn't get to sleep until after 6am. She seemed to be doing very well in everyone's opinion but I had noticed that her breathing was a little fast and heavy. It didn't seem to concern anyone at first and her lungs sounded clear. My milk came in after almost 2 days and she was eating and sleeping great from then on. She was the perfect baby. She basically did whatever we wanted her to do. She ate when I fed her and she slept all the other times. Three days after she was born, we got to attend the home birth of my twin sister's baby girl. We shared the same midwife so when I talked to her at the birth, I brought up my concerns about her breathing again. She counted her respiration's and they were close to 80 per minute, which is pretty high, but since she was only 3 days old, we figured she was just adjusting to her new environment. We were set to see the pediatrician a few days later so my concerns were to wait for then.

Lu (left) ,3 days old, and her cousin, Sailor, just after her arrival

Lu at 1 week old

At the first pediatrician appointment, the doctor's nurse practitioner counted her respiration's several times and got around 65 each time. This concerned her a little but since everything else was normal and she was gaining weight, we were told that we could get a chest x-ray if we wanted and we were to check on it again at her next visit a week later. Being a first time Mom, everyone, including my self at times, thought I was just being paranoid. I wanted the doctor to order a chest x-ray instead of giving me the choice. We went home and after a few more sleepless nights I broke down crying and demanded that we take her to the ER for tests and a second opinion. At the ER, they did a chest x-ray and attempted and failed to do a blood gas test. It was heart breaking to see my newborn baby screaming in pain as they poked her little arm. The ER doctor came in and admitted that he thought her breathing was abnormal and she had some retraction of the ribs when inhaling but said he thought the x-ray looked normal. Since it was a Saturday, the radiologist would not get to look at the x-ray until Monday. That Monday, we went to the pediatrician again and were told that they were having trouble getting the results of the x-ray sent to them so we went home and waited for a call. Around 4:30pm, the nurse practitioner called us and reported that the radiologist had diagnosed her with pneumonia. Since it was almost 5pm, we were told to bring the baby in the next day. I was astounded at the fact that they could let a 2 week old baby with pneumonia wait for treatment when she had already been struggling to breathe for 2 weeks. I hesitated for about an hour and then decided to take her to the ER again, this time at a different hospital. In the ER, they did another chest x-ray and confirmed pneumonia. They admitted her to the pediatric floor for treatment where my husband and I stayed the night by her side. I was relieved to finally have a diagnosis but something inside of me felt that there was something more serious happening.

In the morning, she was seen by the pediatrician and he had the neonatalogist come up and look at her. When she arrived, she looked at her for about 2 minutes before she decided to take her down to the NICU for tests. Everyone on the pediatric floor was kind of upset by this and though it was unnecessary. She was hungry when they took her so I could here her screaming all the way down the hall. It was the first time she had ever been taken from me in 2 weeks so I was pretty upset.

We waited in the NICU waiting room for over an hour when the doctor came in and explained that she had a congenital heart defect. Initially we were very scared and a part of me, being very uninformed about heart defects, thought she was going to die. As she explained the defect and the treatment I started to feel a little better. Lu had an AV Canal Defect, an area in the heart that is not fully formed, leaving a hole and causing the blood to flow abnormally. She would have to stay in the NICU for a few days while they got her heart failure under control and would need a surgery when she was around 3-6 months old. After the doctor left the room, I broke down. All the thoughts and worries that had been running through my head since her birth were finally recognized. We knew what was wrong with her and we had a treatment plan but I was terrified. Terrified of seeing her with IVs and tubes, terrified of seeing and hearing my baby in pain, terrified of the open heart surgery that would be performed on my baby girl, and terrified that she might not make it. I cried and moaned, uncontrollably on my husbands shoulder for a few minutes. He reassured me about what the doctor had told us; that she would lead a normal and active life after the surgery and that we should be relieved that it wasn't something worse.

Somehow we convinced the NICU manager to let us stay in one of the three rooms on the floor for parents who were preparing to take their premature babies home. All the rooms were vacant and I think they felt bad because they knew we were a rare case. Normally babies in the NICU are taken there from the birthing suites and their parents had never had them home. Lu was home with us for 2 weeks so it was very hard for us to give away our control.

After a day, we were told that she had a blood infection. The blood culture had taken longer than normal to grow so they thought it might be a contaminate but she would have to stay in the NICU for at least ten days to treat it with IV antibiotics and she would have to undergo a spinal tap, which came back normal. She was also not allowed to eat for a day and was only given IV nutrients so she was very upset and hungry. The nurses begged the doctor to let them give her 5mL of milk to calm her down and it seemed to help. The next day they could feed her a limited amount through an NG tube.

The NICU stay was 11 days total and she seemed to do well. They put her on a few medications and limited her liquids. It was very hard for us to see her with all the tubes and IVs, which seemed to be moved everyday, one time to the side of her head. Everyday she improved and eventually she was able to take a bottle. Since they had to limit her liquids, they supplemented my breast milk with powdered formula.

Lu was discharged on July 30th. We were so happy to have her home but very overwhelmed with worry and exhausted from the medication and feeding schedule. She was on Captoril to lower her blood pressure, Furosimide to help her kidneys expell excess liquids, and potassium and sodium chloride to replace electrolytes that were lost from her urinating so much from the other meds. After about a week she was able to stop the potassium and sodium, which was a relief because they upset her stomach.

It took us a while to adjust but everyday got easier. She was doing very well for the first few weeks until she got thrush and needed to be put on Nystatin. Ever since then she has lost her interest in eating and has been eating smaller amounts and throwing up. We took her off the thrush medication but she still wouldn't eat much. She was not gaining weight, which was the main goal to prepare for her surgery. She was put on Zantac for acid reflux but we are not sure if it is working. Her stomach also had to adjust to formula because I was hospitalized for three days with severe mastitis and could not give her my breast milk due to the heavy antibiotics I was on.

As of now, she is still on the Captopril, Furosimide, Zantac, and has recently been put on a medication called Dijoxin to strengthen her heart. She is eating breast milk mixed with formula and cereal which seems to help her reflux. The thickness of the milk seems to help her keep it down and hopefully it will help her gain weight. She screams in pain most nights from the reflux but has improved the last few days.

Last she was checked, she weighed 10lbs.9oz. and was not gaining consistently and sometimes losing. We see the pediatrician twice a week and the cardiologist every 3 weeks. Tomorrow we are taking a trip to Orlando to meet the surgeon. We are hoping she has gained weight and continues to gain consistently so they will be able to do the surgery at the best time, which is when she is 4 or 5 months old. It is beneficial for her to be bigger but if she is not gaining weight, there is no sense in waiting any longer.

She is having her surgery in Tampa. It consists of patching the hole with a medical material and constructing the valves. Best case scenario, she won't need another surgery and can be taken off all the medications.

We are taking it day to day and trying to focus on making her gain weight. Despite all her ailments, Lu is a strong and happy baby. She is such a joy and smiles and talks a lot. She is developing normally and seems to be very intelligent. She makes us so happy and we can't wait for her recovery.

Lu at a few days old. We thought she was just chubby but it was actually edema from the heart failure.

  Taken the day she was discharged from the NICU. You can see the difference from the first photo.

 Our Happy Girl