July 14, 1997
“Mom, when you get home from work, take me to the hospital to be checked. I’m in labor and I hurt so bad.” (3:15 p.m.). “Mom, meet me and Tara at The Medical Center.” (4:30 p.m.). I got to the hospital before they did. Your mom was in labor for what seemed eternity and then the doctor came in (Dr. Hooper) and checked her and decided that you were turned the wrong way and that your mom had to have a C section. (4:10 a.m.). You were brought into this old world at 4:36 a.m. on July 15, 1997. Your Aunt Jennifer, Grandmother Betsy (me), Grandfather Joe and Great Grand Mother Betty were in the hall of the hospital to meet you as you were brought out all wrapped up with only your beautiful eyes showing, your greeting into our lives.
You and your mom had a fairly uneventful stay in the hospital and were released to come home on Friday, July 17, 1997. We had a few good days until your mom went to the doctor and he discovered that she had an infection from the C section. Nurses began to come to the house to care for her. You were doing great. The only problem, you would not breast feed. The county health nurse came by on July 23, 1997 and examined you and your mom and gave you both a good bill of health. You were eating well and sleeping great for an infant your age.
Tuesday, July 29, 1997
You went for your first check up at the Pediatrician’s office (Dr. Privott) with your mom and great great aunt (Sister). I got a call at work from Sister telling me that I needed to meet your mom at the emergency room at Phoenix Regional Hospital because something was wrong with your heart. My mouth went dry and I ran from the office. I got to the emergency room and no one knew who ya’ll were or anything about you. The nurse was great and got on the phone to Dr. Privott’s office and told me that you were still in the office. Thank goodness his office is right next to the hospital and I met ya’ll there. It was explained by Dr. Privott that something was wrong with your heart and that you would need to go to the ICU area of Phoenix Regional Hospital until you could be flown (yes, you flew before your mom did) to UAB in Birmingham.
So many tears that we should have dried up [didn’t]. Your wonderful great aunt Leslie and cousin Beth refused to let us go to Birmingham alone and as soon as the flight team took you away, we went home and packed (for 3 days) and they drove us to Birmingham to be with you. As soon as we found you, wrong directions given by flight physician, the craziness of Birmingham and multiple hospitals, we were told that you had TGA, Transposition of the Great Arteries and that you would need to go to Boston for heart surgery. I said, “Boston as in Massachusetts? That is the other side of the world.” But that was what they meant. The doctor in Birmingham told us that if you were going to have your heart repaired that Boston Children’s hospital was the only place to go because “quite frankly we don’t do this surgery well and our babies die.” Can’t get any more open than that! Another flood of tears.
They kept you in Birmingham for stabilization until Thursday night July 31, 1997 when you were flown to Boston for surgery on Friday August 1,1997 (yes, you got to fly again before your mother did). We got to stay at the Ronald McDonald house Thursday night thanks to a wonderful social worker and the next morning we decided, okay, what do we need (since we only had 3 days’ worth of clothes)? It was out of the question to drive back home (200 miles) so we found the nearest Walmart and made a list of necessities. Underwear, socks, notebooks, books to read, back pack to carry on the plane, etc.
Our wonderful friend Philip Saffold had planned to go to Framingham to visit friends for a week and on Thursday, July 31, 1997 stopped in Atlanta and picked up Grandfather Joe (he was working in Atlanta). They drove 1,250 miles, all night, and got to Boston about 2 hours before you went to surgery. Leslie drove your mom and me to Atlanta and we flew to Boston. Your poor mom was scared because of you and scared because it was the first time that she had ever flown. The lady sitting next to the mom on the plane was from Miami and was going to visit family in Boston and she and her son told us that they would be praying for you nightly.
August 1, 1997 (1 AM)
What a place. We felt like we had just “fallen off the turnip truck”. Two women alone in a huge city and we had to take a cab. The cab drivers drive like idiots and your mom hid her eyes all the way from the airport to the hospital. When we arrived at the hospital we discovered that we had arrived before you. What was wrong? More tears. We spent the night in chairs in the family room after the clerk gave us a bag of essentials, shampoo, towels, toothbrush, tooth paste, soap, etc. They promised us that they would wake us when you got in and were stabilized but they decided that we needed to sleep worse and did not wake us. Every time a door shut, I woke up and asked if I could see you. Not yet. We finally got to sleep about 4:30 a.m. and a lady came into the family room around 8:00 a.m. and told us that we had to get up, that we could not stay there. At the time we had nowhere else to go and had not been told anything about the sleeping room for parents. When we met with the social worker she told us that unfortunately the Ronald McDonald house was for cancer patient families only. It was then that we found out about the parents sleeping room and how to go about signing up for a bed.
Operation day. We knew it would be 12:30 p.m. or so before they took you to the operating room, so mom went to Brigham’s and Women’s Hospital (Harvard Medical School) to have her dressing changed and to have her incision checked. While we were there they asked why we were in Boston and we told them about you. They asked if we had eaten and we told them no, so they sent for two trays of breakfast for us. How thoughtful. We probably would not have thought about eating. Mom, Granddaddy Joe, Philip and I spent the afternoon in the surgical waiting room (your mom sleeping). They have a nurse in the waiting room who stays in touch with the surgical team and she would give us updates on how things were going. You were in surgery about 5 6 hours. Dr. Del Nido (your surgeon) told us that everything went as expected and that we could see you later that night.
You were sleeping soundly in what looked like spaghetti junction. Tubes and wires were everywhere. You were completely out and will be for several days. Your chest was open (not stitched up) and the incision was covered with what appeared to us to be orange Saran Wrap. We could see the pulse beat of your beautiful little heart through it.
August 2, 1997 August 3, 1997
Waiting. More of the same, wired and asleep. The hospital offered pagers to family members so that we could get out of the hospital for a few hours each day and they were still able to reach us. We found that this was a necessity even if for an hour to walk, get a meal, etc. We did have one instance when the pager went off and we panicked. We found out that we were paged in error. We were told that your temperature had gone up and that you might have meningitis and were started on an antibiotic in addition to all the other medications.
August 4, 1997
Grandfather Joe was flying back to Atlanta this morning to go to work. Philip came to the hospital at 3:00 p.m. to take us out of the four walls. We rode the T train into the heart of Boston for a good meal. Mom and I were beginning to walk more than we had in a very long time. We needed the exercise. No change.
August 5, 1997
We spent the night at the hospital. We sat and waited. More of the same. Philip came to the hospital at 3:00 p.m. and we ride the train. We meet a friend of Philip’s, Sean and he had just finished a book which we promptly took from him. You were the same. MOM BEGINS TO READ A BOOK!!!!
August 6, 1997
Mom finished the book. Since I am an avid reader (and she isn’t) I was impressed. We sat and waited. More of the same. Philip came to the hospital at 3:00 p.m. and we rode the train to the heart of Boston again.
The days have begun to blur. You got better, you got worse, got better, got worse. We were told that you had had a cerebral bleed but residual effects would not be known until you were a year or so old and beginning to talk and walk.
Prayers were being said for you all over Georgia (Aunt Jennifer’s office held a brief prayer session for you every morning), Alabama, Massachusetts and by every parent in the family room. We had made friends with Erin whose son was sick and we would soon learn that he needed a new heart. We had made friends with a family whose daughter did have a heart transplant. We had made friends with a family whose son died.
Time went on and we waited and waited and waited.
You were getting better and then you decided, maybe you liked it here and took a nosedive and then we cried and we waited.
August 8, 1997
Aunt Jennifer came to Boston and brought us a few more clothes since we still only had 3 days’ worth. We had discovered a washer and dryer in the hospital which was a Godsend. You seem to be better so I went out to Framingham with Philip and Jennifer and Mom stayed at the hotel across the street from the hospital. We had found that every so often we needed to get away from the hospital for a night and if we were needed they would call us at the hotel and we could be there in less than 3 minutes.
August 9, 1997
You seemed so much better that we were able to hold you and we cried. This was the first time that we had been able to hold you in 10 days. What a beautiful girl you were in spite of the tubes and lines.
August 10, 1997
You were so much better and alert that it was time for Jennifer and me to consider going home. The thought of leaving you was terrible. Aunt Leslie has decided that your mom didn’t need to be in Boston alone so she decided to come up. Mom is all grown up and your mother, but she was still our baby. I hoped I had a job when I returned home.
August 11, 1997
Jennifer and I had to leave today and for her to catch a flight if she could. I did have a confirmed seat on the plane. I arrived in Atlanta at 8:20 p.m. and called your Grandfather Joe and found out that she would be on a “catch” flight due to arrive at 11:00 p.m. We finally got together at 11:10 p.m. and she drove us home to Phoenix City. I got to bed at 1:30 a.m.
August 12, 1997
I arrived at work at 8:30 a.m. and asked “Do I still have a job?” I received hugs from everyone and no one said a word other than “How is your granddaughter?”
August 13 21, 1997
Time spent at work, time spent on the phone. I called the hospital at noon and 6 p.m. every day to talk to the nurses. I remarked that UPS had to come off strike in order to deliver our phone bill. The hospital did offer a 1 800 number but when your mom got homesick and called home crying, it was usually on a private pay phone, collect. You were up and down, up and down.
August 22, 1997
Things were looking great. Hopefully you could go to the “well” floor tomorrow, although this was not discussed in your presence because you seemed to love the care you were receiving and wanted to stay in CICU. When I called the nurses at 6:00 p.m, I found that you had already been transferred to the “well” floor. I sat and cried. I couldn’t wait for you to come home and I got to hold you again. It had been a long time since arm time.
August 23, 1997
Your mom said that you slept almost all night. She only had to jump up once during the night when you were whimpering. Things were still tense. The nurses wanted your mom to sleep in another room so that she could get some rest but she refused. The antibiotics were still going for the meningitis and would be for probably another week. Things were looking so good that 7 days would be a piece of cake. Your mom just called and she put the phone up to your ear and I got a chance to talk baby talk to you. Your mom said your eyebrows went up each time I said something.
August 24, 1997
I just talked with your mom and you both had a good night. You would be going for another chest x ray that morning and your mom would take you downstairs in the bassinet. Your last day on the antibiotics would be September 1,1997 so hopefully you would be able to come home September 2 or 3rd depending if you could get the bottle thing down pat for them. You had gotten lazy because of the feeding tube and were essentially having to relearn to suck.
August 25, 1997
You had a big day including physical therapy and trying to eat. You didn’t do too well with your morning feeding. I had talked with mom later that afternoon and you drank 2 ounces. Your best yet!!! Tomorrow they planned to take the pacemaker wires out, hopefully the feeding tube if you continued to eat well and you were getting an EKG and chest x ray. You had better pass them all in flying colors so we could get you home. I could hear you over the phone fussing, not crying, just making little baby fuss noises. It sounded so wonderful, I missed you.
August 26, 1997
You were doing so much better. However, you continued to vomit and were very slow on eating your formula. We did have good news that you had a tentative release date. Go girl.
August 27, 1997
You continued to have trouble eating and were vomiting. The tentative date was still on. We were beginning to make very small plans.
August 28, 1997
It was decided that your vomiting may be due to withdrawals from the methadone and so they resumed it. You were sleeping better, eating better, and not vomiting as much. Our poor drug dependent baby. They would continue to wean the methadone because you could not come home until it was discontinued completely. The release date was still on.
August 29, 1997
Still doing well. You were eating 1.5 2 ounces of formula and were almost back up to your birth weight. (Boy, if they could see you now). The hospital had called to set up home health care as well as physical therapy for you when you returned home.
August 30, 1997
Dr. Allen Percy is the neurologist that we were to contact in Birmingham for your follow up because of the cerebral bleed but we had to get you home first. You were continuing to eat 2 ounces each feeding and you were still vomiting, but not quite as much.
August 31, 1997
Mom stated that the feedings were going good. Grandfather Joe had made plane reservations to go to Boston to get you and Mom. He would leave on Tuesday September 2,1997 and if all was as planned you would be home with us on Wednesday September 3,1997.
September 1, 1997
Preparations were being made. You had your discharge physical this day and you passed it in flying colors. Chest x rays were being done and blood work. Grandfather Joe was leaving early tomorrow morning from Atlanta to fly up and get ya’ll and bring you home.
September 2, 1997
Well, you were coming home. You could leave the hospital but due to flight schedules and such, you would stay until the next day. Grandfather Joe had a hotel room across the street from the hospital but since Mom couldn’t warm or store bottles it was decided that it would be better if you stayed one more night. The phone had been ringing off the hook, as if everyone knew you were on the way. Aunt Susan, Rick (a longtime friend of ours), Aunt Laurie, even Olan Mills were calling so they could take your picture. I as well as several others would be holding you tomorrow.
September 3, 1997
You were home. You seemed to be eating well and we had been unable to detach you from Aunt Jennifer. She felt that since you had been in doors for the past 6 weeks that what you needed was to be walked in the backyard. Tomorrow was your first check up with Dr. Privott. Then we could really begin to fatten you back up. Today you weighed 8 lb. 9 oz. and were 23 inches long. Home Health would begin later this week. Mom went to the doctor for her checkup and you had to go to Birmingham to see Dr. Lau for your cardiology checkup.
After several home health visits the nurses told your mom that they could not continue to come and play with you every day. You were in too good of health for them to continue. Physical therapy came once and decided that their services were not needed.
I don’t know what we would have done without the prayers and support of everyone. Your Aunt Leslie had earned a place in your heart and still thinks she is mother #3.
July 16, 1998
You went for your one year check up with Dr. Lau, the cardiologist, in Birmingham and he was amazed at your health and stated frankly how surprised and pleased he was with your recovery. He also told your mom that we were not to treat you like a “China Doll”. He also brought in several of the doctors in the hospital to see your scar. It was almost invisible. We had told Dr. Del Nido that we wanted him to sew pretty. He did not even use sutures but closed your chest with a “paste” made of blood and other things. We are going back to Boston for a check up on August 28, 1998. We have made several emergency room trips, rushing to Dr. Privott’s office, the best pediatrician in the world, and yes maybe we have over reacted on occasion. So what?
To the prettiest girl in the whole wide world, you are worth it. I love you.