Thursday, September 30, 2010

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

Look at that pouty face. :(
Charming EVERYONE in the building!!!

GI Test

 Finally eating!!!

On our way back from Orlando

Saturday, September 18, 2010

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


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

Thursday, September 16, 2010

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

My Birth Story

Little Lu's Arrival: July 06, 2010

My due date came and went and I was convinced that I would be pregnant forever. Everyone kept asking me when I was going to have the baby as if I was holding it in for the right time. I thought for sure that I would go earlier than my due date, since I had constant contractions since I was about 25 weeks. They didn't hurt but I still timed them often, only to disappoint myself and my family.

The nights leading up to the delivery, I couldn't sleep at all. I was so hot and restless. I would fall asleep after 3am and sleep as late as possible. Each morning, my husband would give me a pep talk and I would cheer up for the afternoon/early evening and then start the cycle again. I did everything, naturally, to help coerce the baby down. I walked and walked and walked but each morning I woke up in disappointment.

The night before I went into labor was the worst, I cried and cried and tried to keep myself from smashing something. Everyone was always asleep and comfy and I was always up, alone, feeling miserable. Every time I struggled to get out of bed and go pee I would look at myself in the mirror for a few minutes and tell myself that I could do it and I would be holding my sweet baby soon.

The next day (July 5th, 8 days after my due date) I got up earlier than normal and felt pretty good. My husband, Matt, had the day off so we went with our friends to look at houses and eat lunch. After lunch, I picked up some raspberry leaf drops at the health food store hoping it would do the promised "uterus toning"... whatever that meant. I had some back pain and cramping but just figured it would lead to the regular disappointment so I didn't freak out about it. I did feel different all day and even said a few times that I was sure it was the night I would finally go into labor. I felt very tired and crampy and wanted to take a nap but I knew my house would be too loud and smelly (my dad was in town) so we all went to my in-laws house to chill. Matt hung out with our friends and his parents while I slept in the guest room. When I got up, I felt normal and was so upset that my back pain and cramps went away. We decided to go for a walk around the block hoping to get the cramps back but nothing happened.

Later that night, we went to TGI Fridays for my friend's bday dinner and the cramps and contractions were back. They didn't hurt at all and weren't at all consistent but I still knew I would have the baby that night, even though a part of me was still anticipating disappointment. I ate so much that night, which came back to haunt me later.

Matt and I went home, played some Peggle on the PS3 and went to bed around 11:30ish. I actually fell asleep for about 5 minutes before I had to get up and pee. I got to the bedroom door, felt some back pain and cramps, stopped, turned around and almost woke Matt up, but decided to go pee and see if it happened again. Sure enough, 7 minutes later, another one. I said something to Matt but it was so bad, I had to run back to the bathroom. When I got back, Matt was up, with the lights on holding a pad of paper, writing down the time. 7 minutes later, another one. Every contraction, I would stand up and lean forward against a wall by my door and stare at the letters on my golf hat. I remember seeing and hearing my mom come in the room during a bad contraction and I told her leave for a minute. I just couldn't stand any movement or noise. After a few at 7 minutes apart, they started at 5 minutes and that is when we made all the phone calls and started setting up. It seemed like it took everyone less than 5 minutes to arrive and I didn't even notice or hear my midwife come in. Everyone was running around setting up supplies and getting the pool ready. I felt like a mommy cat while in labor. I just wanted to hide under the bed in the quiet dark and push the baby out by myself. I needed everyone's energy to match mine but they were all running around so my sister and I went into the nursery where it was quiet and slow. At that point the contractions were 2-3 minutes apart and I was moaning through them. That is when I puked up the plethora of grossness I had eaten at Friday's, which really grossed out my sister. During every contraction, I couldn't stand any movement, noise, or most importantly, any kind of caressing. No one was allowed to touch me, which I kept having to point out to everyone. I remember feeling like I was on drugs. Every time someone would talk, it would take a minute for me to hear it and sometimes I was saying stuff without even knowing I was talking. I kind of remember saying something to my husband about how relieved I was that I didn't have to eat Mac n' cheese with A-1 sauce (he had been bugging me to try it ever since he heard it could induce labor).

My midwife arrived around 1:30 and checked me at 2am (2 hours after I started contractions). They were about 1-2 minutes apart and pretty bad. I remember thinking that they were so bad that I wasn't sure if I could handle transition when it came, since those contractions are usually way worse. When my midwife said I was at 9cm, I was so relieved that I was already almost done with transition and it was only 2 hours into it!

I stood in the living room in a bikini top and a towel, waiting for the birthing pool to be ready. I leaned against my mom and then my husband, moaning through each contraction until I could climb into the pool. I got in the pool for what seemed like only a few minutes before I felt the urge to push. I got up and went to my bed and had the WORST contraction ever. I think I almost squeezed my husband's arm off with my bare hands. My midwife got me situated in my bed and then broke my water. That is when things really started picking up. It seemed like only a few minutes but I pushed for an hour. At some point, they showed me the head with a mirror and let me touch it, which was encouraging because I didn't feel like my pushing was doing anything, but it also broke my concentration. I felt like after every push, it was going back in. I kept asking if I was doing it right and if they were sure it was coming out. I was convinced they were lying to me because earlier in the pushing I kept feeling and smelling myself go poop but when I asked they dodged the question and said no and it was OK. I really didn't care that I pooped but I guess they thought I would. It was kind of funny and relieving so I really didn't care at all. I knew what would come out of my vagina, after the baby, would be way worse.

I would push through every contraction, usually getting 1 1/2 good pushes in before I felt like I was going to pass out. I closed my eyes and let my mind and body do what it needed to do. Everyone was cheering and counting and telling me I could do it. Toward the end, my vagina felt so stretched that I just kept pushing through the pain and exhaustion until it was out. When she finally popped out, everyone kept saying "oh my god, its huge!" and when they put her on my chest, I was shocked at her size. It took me a minute to check if it was a girl or boy and it was hard to see because the cord was between her legs. It is kind of fuzzy but I wasn't at all surprised when I saw her little vagina. Something inside me, for the last few weeks, knew it was a girl.

Matt cut the cord and then I delivered the placenta. Then I held my daughter and she nursed for about an hour while they cleaned me up. After a while, we measured and weighed her. She was 20.5 inches and 9lbs.4oz. (12 oz. less than the doula's guess after seeing her and 2 lbs. more than my guess before seeing her). I still can't believe something of her size was alive and kicking inside me for so long. I guess that is why I was so miserably crippled for the last few weeks.

I remember being so shaky and freezing cold so it felt awesome to take a shower, even if it was difficult to stand. I had used so many muscles pushing that baby out that I felt like I would fall over. In the shower, I got the nerve to feel down there. I had some major hemorrhoids and a small tear near the bottom of my vagina. It was so small that I didn't even need a stitch, which was impressive considering the size of the baby I had just delivered. Thank god for my midwife and her technique. If I were in the hospital, I would have either had a C section or episiotomy and would still be in pain to this day. It only took about 5 days to be able to walk normally. I kind of feel bad because my sister, Kris, went into labor only 3 days after me so not only was I still sore and walking like a cowboy, I was tired from staying up all night with Lu and my nipples were really sore so it was hard to help her. It was the worst physical day for me. I could barely sit up and my nipples were so sore that nursing made me cry but we got through it and ended up with two beautiful baby cousins.

I am so glad we did the home birth and I am even happier that my labor and delivery only added up to less than 4 hours. I am also glad that I went first because if I would have had to see my sister's birth first, it might have scared me into the hospital. It was traumatically disgusting and scary when you are on the other side. For me, being the one in the bed, in pain, was easier.

Overall, It wasn't half as bad as I thought it would be and more joyful than I could have ever imagined. It was amazing! The love you feel for your baby immediately and the sense of accomplishment was awesome. I did it for Lu at first but in the end I can't deny the feeling it gave me as a woman. I am a champion! :)


I believe my words were, "No f***ing touching... please."

Lucianna Violet Favero
July 06, 2010

9lbs,4oz., 20.5 inches long

Pure Joy

Lu and Sailor- July 10th 2010