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Breastfeeding and Open Heart Surgery

By Badass Katie, Badass Breastfeeder of the Week: 3-10-14

As most know breastfeeding can be a challenge. Try breastfeeding a baby that was born with an unknown heart defect.

Katie, 2 month old open heart surgery 10-14-13

In the picture you see a mother leaning over a hospital bed nursing her 2 month old daughter after open heart surgery. Many question what happened? How is the baby present day? My favorite, who had open heart surgery? The mother or the baby? Questions that I would love to answer by sharing our story.

My pregnancy with my daughter was wonderful. Even for running after my 2 year old son. There were no complications, she was just measuring smaller than she should. I am small myself, only 4’11”, so the doctors did not show much concern. My daughter was born on July 29th weighing 7 lbs and 19 3/4″ long. She was searching for comfort as soon as she was delivered. I immediately put her to my breast, even before my husband cut the cord. As she was nursing I took in all of her beauty. She was perfect! Beautiful dark hair that covered her perfectly shaped head, big, gorgeous blue eyes, all ten fingers, all ten toes, the cutest little nose to match her tiny ears, and the perfect name for all of her beauty, Emalee Noel. We spent 3 days in the hospital with no problems health wise or feeding. When the time came for us to be discharged, the nurse came in with my papers and said I was discharged but Emalee would need further testing, the hospital pediatrician would come explain shortly. Two hours passed and the pediatrician finally came in. He explained that a murmur was heard and he would have to perform an echocardiogram and have it examined by a pediatric cardiologist to determ its significance.

It took around 6 hours for the test to be performed and results to come back. The longest 6 hours of my life, or so I thought. The test had determined that Emalee infact had 2 holes in her heart (atrial and ventricular septal defects). I could feel myself choke up the tears as the doctor explained that her heart was over working itself. Oxygen rich blood was mixing with oxygen poor blood in return creating the murmur. It was so hard hearing my newborn had congenital heart disease. She was still able to be discharged along with intructions to follow up with a pediatric cardiologist in two weeks.

For a 8 weeks Emalee continued to have cardiology appointments every 2 weeks.

At 6 weeks old her heart started to fail. She grew very weak. She strained to catch her breath during tummy time and nursing. She would sleep as much as a newborn. I would have to wake her to nurse, knowing it wouldn’t stay down. I did this because she needed the best and I refused to give up on nursing.

Her next appointment with cardiology went very different. Instead of returning home, Emalee was admitted to the hospital. She began medication to lower her heart rate and decrease the fluid on her liver. It was a short but stressful stay. We returned home 3 days later along with daily medication. During her hospital stay, the possibility of surgery was discussed. There was a 95% chance that surgery would need to be performed.

Two weeks later, it was determined that the medications were only buying time and surgery was needed immediately. Everyday that passed I was on a roller coaster of emotions. I put blame on myself. I questioned Gods existence. I searched mine and my husbands family history for others with heart defects. I couldn’t believe that my perfect daughter had an imperfect heart.

A few days before surgery, I came to the realization that trying to place the blame was not going to fix Emalee’s heart. Open heart surgery needed to be done.

Most people will never know what its like to hand your baby over to a nurse for surgery. My amazing husband had to be strong enough for both of us. He handed her over knowing the possibility of losing her.

Surgery was expected to last 4-6 hours. She has rolling veins so it took a little longer to get the iv’s started. Therefore, this was the longest 9 hours of my life.

When we were finally able to see Emalee no words could ever describe the way she looked laying in this tiny bed with several machines, the wires, iv’s, a chest tube, several monitors, a breathing tube, and bandages. Many wouldn’t be able to look past it all. But, all I could see was my beautiful baby girl. Still just as lovely as the first time I had laid eyes on her.

The next few days were rough. Her pain management and waiting on the breathing tube to be removed was the hardest. But little by little the tubes and machines faded away. By day three Emalee was finally able to nurse. She has never taken a bottle but, the doctors needed to measure how much she was eating. By this time I had the nurses freezer stocked with expressed breast milk so it was easy to get a bottle ready. Emalee actually took her first and last ounce of expressed milk. Who knew they would be one in the same? She refused every other bottle the nurses tried to give her. (I refused to feed her a bottle) Finally, after explaining to the doctors that I can keep a log of how often and long she actively nurses, I was aloud to. But I still couldn’t hold her. As I mentioned before I am very petite. This was a job for me. I tried tippy toes, sitting in a tall desk chair, my husband even tried holding me up (his idea not mine). Once one of the nurses realized I was too short to just casually lean over. I then recieved a stool. (Best invention ever for this girl) I was back in the business of feeding my beautiful baby. The following day I was able to hold her. It was just like holding my newborn baby all over again.

After a week stay at the hospital, Emalee was discharged to follow up with cardiology in 5 days. Everything looked wonderful post operation. Her next post operation appointment was at 6 weeks. At that appointment we recieved news that she would need to return in 3 months. At this appointment we were informed that she would need to return in 6 months. She went from seeing the cardiologist in 2 week intervals to 6 month intravals. We love our cardiologist and nurses. They hold a special place in our hearts. But, we love not seeing them as often.

breastfeeding and congenital heart disease

Today, Emalee is seven months old, still exclusively breastfed, and is showing wonderful results on all of the cardiology test.

She is still just as beautiful as she was when she was born. Only, 1 ounce away from doubling her birthweight and on track with all of her milestones.

I have shared our story with you not for publicity or for you to feel pity but to show that nothing is impossible with a little will power and trust in God. Please feel free to share our story. Many are unaware that congenital heart disease affect 1 in every 110 children born and that no matter the circumstance breastfeeding is always possible. Thank you all for your kind words and blessings.