We learned about Myanna when her birth mom was still carrying her in her womb. At approximately 34 weeks gestation, she arrived and we had to hurry five states away to get to our little girl. We were excited and nervous to meet her and hold her finally in our arms. When Myanna was 16 hours old I was able to first set eyes on her beautiful face. She was diagnosed with intrauterine growth restriction at birth which resulted in a birth weight of only 3 pounds 5 ounces. She was unable to drink a bottle when she was born and for days after due to her fast heart rate and rapid breathing, tachypnea, so they inserted an NGTube for feedings. She became jaundice and was placed under phototherapy or fluorescent lights for 3 days. . IT was very hard during those first few days of life as we were unable to hold her. Watching her crying just broke my heart. Her daddy finally told the nurse that we wanted to hold her for a few minutes during feeding a couple times a day just so she knew she wasn't alone.
She had lost weight and dropped below 3 pounds during those first 5 days of life. Once the fluorescent lights were no longer needed, we were able to hold her and feed her more formula. She started to slowly gain weight. At two weeks old, a doctor realized that the congenital heart defects they had seen on the echocardiogram were more significant than doctors had originally suspected. He felt they were causing her problems with eating as well as breathing. They added heart Lasix medications to help her little body and lessen the amount of fluid on her lungs. Within a few days we noticed a difference and at 1 month of age, she was discharged from the NICU weighing in at 3 pounds 15 ounces. We were so very happy to finally get to bring her home. She was ready to meet her family and they were overjoyed at meeting her.
Her feeding issues continued however. She was a fussy baby and drinking was difficult. I had to wake up multiple times during the night and feed her in her sleep. Dream feeds became the norm in our house until Myanna was almost two years old. We fed her high calorie formula in the hopes of gaining just a pound a month. It was a struggle and we were barely making a difference. The Gastrointestinal doctors added reflux medications and started to mention inserting a GTube but with around the clock feeds we were staying afloat. The cardiologist added another heart medication to try and keep her little body from working so hard. She was burning up the precious calories as quickly as she was drinking them.
At almost 5 months old, she decided to practically stop drinking her bottles altogether. She was almost 8 pounds but was only drinking 12 ounces in a day. The doctors feared she would become dehydrated and she was admitted into the hospital and placed on an NGtube again. She rested over the weekend and on the following Tuesday they conducted a Cardiac Catheterization. The results showed that her two congenital defects, VSD and ASD, while they were small they were too large in comparison to her tiny heart which at this point was the size of a walnut. They scheduled open heart surgery for that Thursday, one day after her 5 month birthday.
We were obviously nervous and terrified. I could not imagine what was going to happen to my tiny baby. As she lay in my arms, only 8 pounds and perfect...I had to block out what was coming in the days ahead. I guess moms go into survival instinct and a bit of denial. That was the case for me. I was comforted by the amazing team of cardiologists we had and our wonderful surgeon. He was kind and gentle with her. He had such small hands and I knew he had a wonderful reputation. I was confident he could and would take care of my baby. Dr. Irving Shen, we are forever indebted to you.
The day of the surgery is a blur really. It was long and agonizing waiting for any news. Then hours and hours later, they called our name. We finally were able to see her...and I just cried. Happy tears, sad tears, tears of relief and tears of empathy for what she was going through. Myanna was still sedated, but as we touched and spoke to our tiny baby girl, tears came out of her eyes and down her face. It broke her daddy and mommy's heart right then and there. We stay and took turns with others who came to see her. When evening came, we were told to leave but I wasn't going anywhere. They said there was no bed and the lights would remain on...and so I sat watch over her because I wasn't going to leave her alone. I sang and I held her hand and I hope I gave her strength when she needed it the most.
After only 36 hours, Myanna was moved from the PICU to the surgery recovery floor. She was very uncomfortable as they weaned her off of the prescription pain medications and only allowed Tylenol and Motrin. I tried to have them give more medication for the pain, but this was protocol. It was heart breaking to see her in such pain. I slept in her room every night, the few hours she slept and walked her in a wagon the rest of the time. I was just to keep her moving and not crying. It was a really hard time for her and she was fearing doctors and medical personal.
She had many visitors over the week she was admitted after the surgery. Family and friends came to visit and sent prayers and gifts. She became more alert and slowly started drinking from a bottle. After a few days she started to lost the extra water weight she had gained from the two surgeries.
After almost a week, her cardiologist told us to take her home. He said the light from her eyes was gone and she needed to be at home with her family where she could find comfort. He was right, and has always taken such very good care of my girl. Dr. Patrick Callahan, we appreciate everything you have done over the years and will do in the years to come. Blessings to you and your family. ..Cont...