Haydn was born April 14, 2016. She was a healthy baby with a small heart murmur. Our pediatrician is also a cardiologist, which made it easy to keep an eye on the murmur. She had pretty bad jaundice and was on a biliblanket to help get rid of it. It took longer than normal to get rid of it, but we weren't worried when she recovered. At her 4 week appointment, she was just about back to her birth weight.

Her breathing rate was faster than normal, so we were to return in 2 weeks for a check up. The breathing was a little better at the 4 week appointment and she was completely back to birth weight. As parents, we noticed over the next 3-4 weeks that she seemed to be getting longer but not any heavier. We tried to imagine or hope that things were going down the right path. We went to her 2 month appointment with fingers crossed. Our hopes were crushed when her weight had not changed at all and our doctor now heard two separate murmurs. He ordered an echocardiogram immediately and even came into the room to review it as I sat next to Haydn.
We learned that Haydn had several serious heart defects. She has an Atrial Septal Defect (ASD), which means there is a large hole between her two upper chambers. Babies all have holes while developing, but most close before they are 2 months old. She also has a couple leaky valves near the hole. One of those was a coarctation of the aorta. Her aorta had a narrow pinch, heavily restricting bloodflow to the lower half of her body.

We hurried to Iowa City for another echocardiogram. After the test, we were told we needed to admit her immediately. The coarctation had narrowed even more and at this point they could barely feel a pulse in her feet. Her stomach had started refusing milk also. She lucked out because a small vessel (PDA) that is open during development inside the womb had remained open. Otherwise, she would have gone into heart failure. The whole admission process was a blur of several people in and out, hooking her up to tubes and machines, asking us questions, introducing themselves, and explaining the process. The surgery they thought they could waited 4 months had to happen now.

Her surgery was on June 28th. Her procedure was done through a thoracotomy and was very successful. Hank and I took turns staying in the room until we were lucky to get a Rossi House room in the hospital. It is like a hotel room for very low cost for anyone who has a patient in the NICU or PICU. Once you got a room, you could keep it no matter what floor they end up switching you to. For two weeks, Haydn faught hard. She had the coarctation fixed and the PDA was closed off. They could now feel pulses everywhere and she moved well to get off the machines and most tubes within a few days.

Everything was further complicated when Haydn got thrush. Her vocal cord was not always moving properly which effects breathing, voice, and swallowing. She went a day or so without eating much and despite my pleas with the night nurse on our new floor the thrush went unnoticed. The morning doc rounds was the next chance I got for them to look in her mouth. The thrush was far back on tongue and in throat. She had a swallow test and scope done. She can only swallow thicker liquids through a bottle and must receive most of her nutrition through nasogastric feeding tube. It should improve in 4-6 weeks or else she will need a small procedure to return the cord to normal. Our main goal is weight gain right now.

Her next surgery will be open heart to fix the hole and valves. They would like her to be age 1 or 2 because the body/organs are more developed to undergo bypass. Even with insurance, these procedures, home health care, appointments, traveling, and medicines are not cheap. Our poor little girl is always happy despite all of the poking and proding. We appreciate your thoughts, prayers and kindnesses.