Taya
I write this letter just 1 day before my daughter, Taya Grace, will celebrate her 2 month old birthday in the hospital. Never in my wildest dreams did I expect to be where I am eight weeks after her birth. The following is our story.
Taya Grace was born on May 1, 2009. We had a healthy pregnancy and Taya was labeled a healthy baby after her birth. She weighted 6 pounds 14 ounces. I noticed that she slept a lot while we were in the hospital. I questioned why she slept so much as well as why she would only nurse 5 to 10 minutes at a time. I was told new babies go through a period 12 to 24 hours after birth when they are very tired. Things still seemed “not right” to me, but I thought maybe she was an extra good baby and she would snap out if it.
We went home from the hospital a very happy family on Sunday, May 3rd at 11:30 a.m. Taya was doing great. I spent the day by myself with Taya. My husband took our 3 other children to a little league parade and then practice. All of the kids had a chance to hold their sister before they went to bed. That evening and night Taya was very fussy and tried to nurse every hour. At about 4:00 a.m. Monday, May 4th, I noticed that Taya was not breathing right. I woke up my husband and we rushed to the hospital 10 miles from our house. Our lives changed very quickly after this day.
Taya and I were flown from a small hospital in Iowa to a bigger hospital in Sioux Falls, SD. Taya spent 4 days in Sanford Hospital and was later flown to Ann Arbor, MI for a major surgery to correct her heart defects. In two short hours after arriving at Sanford Hospital we learned that our baby had 3 heart defects; Interrupted Aortic Arch, Aortic Stenosis, and Ventricular Septal Defect (VSD). We also later learned Taya has DiGeorge Syndrome (immune deficiency), which is common with the heart defects she has.
On Friday, May 8th, Taya and I were flown from Sioux Falls, SD to Ann Arbor, MI for Doctor Bove to perform the Norwood and Rastelli procedure to correct Taya’s heart defects. Taya went through surgery on Friday, May 15th, 2009. On Saturday, May 16th, 2009, Taya was put on ECMO (heart bypass) because her body was not able to handle the stress of the major surgery. Taya was able to come off of ECMO on Thursday, May 21, 2009. During the course of all of this Taya was on many medications to control her pain, nutrition, and perform all the basic bodily functions.
Taya has recovered from her surgery and has good heart and lung function. Eight weeks later we are still in the hospital. Over the last 4 weeks we have been working on getting Taya to take food through a feeding tube into her stomach and later her intestine. Taya also has had some infections along the way. We are praying that we will soon figure out what Taya needs to start eating to gain the strength she needs.
I have learned so much about myself and what it means to be a heart mom over the last 2 months. I had no idea this world was out there. So many people have healthy babies and have no idea what it is like to have a baby that you can’t hold for 4 weeks. Or what it is like to see your baby crying, but they can’t make noise because they have a venilator in their throat. There are so many things I took for granted until I was faced with Taya’s health struggles.
I pray that the letters we are sending will help others to see what the world of being a “heart mom” is like. There are too many babies that are gone before they are able to experience what it is like to be outside and walking. Please help us to improve the research needed for babies born with heart defects. Babies born with CHD deserve a chance to live a normal life. Please help us toward that cause.
Judy Delperdang
“Heart Mom” of Taya Grace