The clarity in which I remember the day after we heard the words Katie and Down syndrome in the same sentence still remain in clear focus for me. It is as with everything in life…some people remember every detail, some people say they were in a fog after the words were spoken.
I had been on bed rest for about 2 plus weeks prior to having her. Went to work and showed a co-worker how swollen my feet were. Next thing I know my boss is demanding me to lie down and get vital signs. Blood pressure elevated too and I am sent home to call the doctor. I go in to see the doctor and am admitted to the hospital. After a few days I go home with strict instructions to stay in the bed the rest of my pregnancy. I am back in the hospital 3 days later for another week. I go home and less than 36 hours later I had Katie. I remember not sleeping the night before her birth, staying up and writing thank you cards out for gifts I had received and whatnot. That morning my water broke and a hour after I get to the hospital, I have Katie. The birth is pretty much uneventful. I screamed pretty loud during labor (scared Blake to death, no epidural, just a shot of pain medicine) and I had to have some oxygen right at the end. Probably needed the oxygen because I was screaming so much and too loud! Anyway, Katie is not as responsive as she should be. Apgar score a 4, had to give her Narcan (helps to reverse the effect of Demerol—the pain medicine I had gotten) because they felt she was sedated from that. Apgar score comes up to a 9. No mention that anything else was a concern. We go to our room and spend a very quiet night with Katie. I didn’t sleep at all either night after I had Katie or Blake. I guess it was the wonderful miracle of birth that kept me on a natural high. I remember telling Kiley that I wanted an echo (ultrasound of the heart) done on Katie because we had seen a cardiologist while I was pregnant, just because of Blake’s heart history. We had not named Katie yet when I was told that we couldn’t get the echo done until she had a name. So, in a split second, I just went with what I wanted to name her and signed the papers. I remember Kiley telling me that he had went around to the nursery when they had brought Katie back there that evening and he saw written on a piece of paper by her name the words heart murmur. I told Kiley that night that Katie probably had some kind of heart problem. I just sensed it. When she wouldn’t feed that night—she wouldn’t suck on the bottle---it just made me feel that something was wrong. I attributed it to her heart as the reason she wasn’t feeding. Looking at Katie, I never once thought the words Down syndrome. Looking at her now, I can see some of the features they mentioned, but back then I didn’t see anything.
The photo they take while you are in the hospital.
The words Down syndrome had been brought up to me back at my 18 week check up. My AFP was low and I was told that Ds could be a possibility. I remember the words abortion being mentioned and that if something was wrong, we should pursue finding out now in case we wanted to terminate. My doctor was wonderful. Let me tell you that there was so much more to this conversation because he knew that wasn’t what I wanted, but legally he had to let me know my rights. I saw a specialist, had several level 2 ultrasounds which all looked normal and was told that everything was probably fine. I never gave the words Down syndrome anymore thought after seeing the specialist. We elected not to do amnio because it wouldn’t have changed anything for us and even though the risk of complications is small, it wasn’t worth it to us to take that chance.
People ask all the time if I wanted to know beforehand. In some ways yes, but it all worked out the way it was supposed to for me. I had a beautiful, uneventful pregnancy. I enjoyed every day of my pregnancy. I was never sick and I felt so alive during that time, so I look back on my pregnancy with very fond memories. The next morning after Katie’s birth, Katie went back to the nursery some time around 4 am so I could rest. When they hadn’t brought her around to me around 8 or so, I wondered what was going on. Kiley went to the nursery and he was told she needed to stay in there a little longer. He then went home to shower and change. While he was gone, the doctor came in with a nurse and told me that they thought she had Ds and that she did have a heart defect. I was all alone and I remember asking the doctor what made her think Katie had Ds. I was extremely calm—almost no emotion. I remember telling them that I wanted to go to the nursery and see her and that I wanted my doctor called and I wanted to be released to go with Katie to the other hospital. (We were transferred 1 1/2 hours away to the University of Florida.) I called Kiley at home and just stated what the doctor had told me. He started crying as did my parents when I told them. I started getting visitors prior to us leaving the hospital and I was extremely calm through all of it. No tears but no real joy either—just smiles of I can handle this. I just accepted it because I knew that I had two ways to deal with this. I just felt like I had to be strong for everyone else around me. It was only when I was in the car and we were almost to Shands and Martina McBride’s song In my daughter’s eyes came on that the tears started flowing. I was talking to my sister in law at that time and I couldn’t speak because I was so taken with the words of this song. Now mind you, this was just a random radio station we had on—just background noise as we were all lost in thought on the drive down. For me to hear that song---I wondered if that was how my daughter would see me—what would our relationship be? What was our future?
We would stay 6 weeks in the NICU. We went from level 3 to level 2 and then back to level 3 for another week after we had a scare and they had to bag Katie due to her oxygen levels dropping in the twenties and thirties. Talk about feeling hopeless. You have a massive amount of people running to your bedside and you are sitting there wondering if your child is going to breathe. After Katie was sent back to NICU 3 for the week, we made it back to NICU 2 and we stayed there the rest of our trip. We became friends with the other moms (some babies are there for 3 or 4 months or longer) and with the staff. We fell into a routine and it became a little easier not to spend my first waking moment at her side. I would sleep well at night after those first two weeks and I would get up and not rush to jump to her bedside. I knew that once we left, all her care would be up to me, so I learned to appreciate that these highly trained nurses would take very good care of my baby while I wasn’t there. We stayed in the hospital for 6 weeks because she was having trouble breathing and with her feeding issues. We were able to bring her home with a heart monitor and oxygen and she didn’t have to come home with a tube to help her feed. Once she was home, we worked on keeping her as healthy as she could be and helping her to gain weight prior to her surgery. She was 5 pounds when she was born, lost down to 4 lbs 12 ounces and left the hospital at 6.5 lbs.
I can’t tell you how ready I was to be home. It is not easy to be away from home, just having had a baby and dealing with all the fluctating hormones and dealing with all the complications that she had at birth, not to mention being away from my son for 6 weeks and thinking that this was not what I had in mind for a maternity vacation. It wasn’t the birth story I had planned out to go along with my fabulous pregnancy, but it is a story of how I was changed after that moment of hearing the words Down syndrome.
Looking back, I can tell you that that time was a gift to me. God used me in a way that to this day has changed who I am. His blessings are revealed to me daily and I am grateful for this life that I live, grateful that I am Katie’s momma and that I get to love her in a way I can’t describe. The rest of the story to be told later this month…..
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