Little Lu's CHD Journey: 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.