I woke up the next morning at about four am. My sister Elizabeth was laying on the sleeper sofa in the room with me half asleep. The TV was on, I started replaying the night before in my head. It had not all been an awful dream....this was real. My baby was not even 12 hours old and was 30 miles away from me.....and I had no clue how she was. I called my husband at home and he answered and sounded terribly tired. He had been at Shands till about 2am. I told him to go back to sleep, he was going to be coming back to see me at 9. My sister stirred and I asked her to help me get up to go to the bathroom. She did and I just kept crying and thanking her for being there. I am incredibly blessed to have such a wonderful supportive family. I took a shower and cried through most of it. I still can't believe this is happening.
We had the nurses put a no visitor sign on my door and I wouldn't take any phone calls except from immediate family. I couldn't talk to anyone. I was barely able to hold myself together and if I had to repeat what was happening to me over and over I don't know if I would have been able to keep it together. The thought of hearing one more person say "I'm sorry" was enough to make me hysterical.
I was so numb, sad and confused.
It's strange because I was trying not to let myself think of all the things that could be wrong with Makily....I mean I KNEW something was wrong BUT my mind wouldn't let me think of it.....I just shut down. I do believe that you have a defense mechanism in your brain that helps you shut these things out when your are dealing with too much at once.....never believed that until I had Makily.
Allen got there and Dr. Pierre came in soon after. I was happy to see her but apprehensive at the same time. I knew that SHE KNEW something was wrong.....she most likely knew what it was.....and honestly I didn't want to know. She was so caring and was patting my feet and leg as she was talking to me......this was comforting. She told me that the doctors at Shands thought Makily had Turners Syndrome. I didn't know what that was....she explained it to me. Basically Turners girls are short statured, may have scoliosis and growth issues and are infertile.....but cognitively they are usually "normal". I could handle that I thought, yes I was sad but I thought at least it's not too bad. She stressed they weren't sure what it was really and that Makily had blood drawn when she got to the NICU to test her chromosomes. She also explained Makily had Pierre Robin Sequence. It's an abnormally small chin/jaw, recessed tongue and cleft palate. I didn't notice her chin being small when I had held her the night before. I had been so out of it though.
Dr. Pierre left and I remember Allen pulling a Polaroid picture out and giving it to me. It was my daughter. I briefly looked at it and put it away. She looked awful. Tubes and wires everywhere...she was so pale, she honestly looked dead to me. My mom and dad came in and very soon after my Doctor came in. He asked me if I wanted to leave the hospital and I said yes. He was extremely nice to me. I was angry with him for ignoring me the day before and I am sure he was freaked out when he found out my baby was so sick. I had more things to worry about at the point than him. He said he would release me but I would have to have a two week post partum so he could make sure I was okay. That was fine.
We got checked out at about 11 am. They wheeled me out into the hall and I looked over and there standing in the hall was a Daddy holding his precious newborn in his arms. I wanted to bust out crying right there. It was the worst feeling in the world. They wheeled me downstairs and it was all I could do not to bawl all the way down....I was choking back tears the whole time and had my head down. My parents got me into the car....packed the stuff in the trunk, Allen got in the back with me. As we drove away I cried so hard, I didn't think I even had any tears left. I was supposed to be holding my baby, I never imagined I would leave the hospital without her in my arms. It was an awful, horrible moment in my life....the car was quiet except for my sobs. No one really knew what to say, and silence was really what I needed anyway. Allen just held me.
We got to my house, I took another shower and tried to make myself as presentable as I could. Right as I came out of my room from getting ready, my sister Deborah arrived. She looked at me and said "what happened to you?" At first I wanted to say "uh where were you last night?!" Quickly I realized she didn't mean it that way....I knew I looked like death warmed over...I had bags under my eyes and they were so swollen from crying. I am sure she was shocked to see me look so awful that she just blurted it out. We have joked about it since then.
I wanted to pump....well I didn't want to pump really...I wanted to breastfeed but I wasn't able...I knew I NEEDED to pump. I went into the nursery and sat in the rocking chair and cried. Here I was with this machine on my boob, when there should have been a baby. My sister came over and sat with me while I pumped. Allen came in too. They talked to me and it helped to distract me from what was going on. I wasn't getting really anything out but a couple of drops here and there....great I thought I can't even make milk for my sick baby. I realize now that the next morning after you have a baby your milk hasn't come in but I was already beating myself up for everything that was happening. I needed someone to blame and I was that person. I carried Makily, my body helped to form her so it was my fault. I took my meager 3 or 4 cc's of breast milk....put it in a baggy and we headed to the NICU.
I was nauseas the entire 30 minute drive there. I wanted to go and didn't want to go at the same time. I was terrified of what I may be told, what I might see....but especially how I would react to all this. I was already thinking things that I didn't understand. We got there and Allen went through the routine....Scrub your hands, put on the yellow gown. We walked to the back of the NICU and there she was. She looked as bad as she had the night before BUT this time I noticed yet another problem. Her head looked like someone had hit her with a hammer. She had a HUGE dark bruise in a circular pattern with blood caked in her hair. I was appalled and demanded to know what it was! The nurse said it was from when they used the vacuum suction at delivery. I said THEY NEVER USED THAT ON HER!!!! She then said that it was trauma from the delivery then.
"Trauma from delivery".
Another reason to blame myself.
She was on a ventilator, her nose was bloody and so was her mouth, they had a hard time intubating her. Her face was very puffy and swollen. I would touch her and her oxygen levels would plummet, her heart would start to race. The nurse told us not to touch her anymore. How can a mother look at her sick child and NOT touch her? I felt awful that my touching her would make her sicker, I kept telling myself Makily didn't like me. (I know this is extremely foolish and silly but I was nuts at the time) I was convinced she hated me for a long time.
We stayed in a hotel about two miles from the hospital the first two weeks. When Makily was about three days old, we got up that morning and Allen had a message on his voice mail that said "Mr. Caldwell, I just wanted you to know that Makily started to have a real rough time last night so we had to increase her oxygen and add another gas called Nitric Oxide." She had severe pulmonary hypertension (due to all the meconium). Her lungs did not want to stay open. I have since read that most newborns with a severe case of pulmonary hypertension such as Makily's usually die. She pulled through though.
When Makily was six days old, the geneticist came in to talk to Allen and I. I saw him walking into the NICU and thought he looked like a very important man. He approached us and introduced himself. Then he did something strange, he looked at the ventilator and asked what it was. I said "uh it's her ventilator". Strange I thought, this man is a geneticist and doesnt know what a ventilator is. He looked at Makily and then asked Allen and I a lot of questions, including if we were related. I wanted to laugh but I looked at him with a straight face and said no. (I guess some people answer yes to this!) He went to go get Makily's chart and when he walked away Allen said to me "Did he REALLY ask what her ventilator was!?" I said "yes Allen he did" We both laughed at this and Allen said "Well if he comes back and starts examining Makily's dolly saying well let's see here, her hair is rather yarn like and she has very pasty skin, we are running out of this place and quick"......we both became hysterical laughing at this, my husband amazed me that admist all we were going through he still knew how to make me laugh and smile, our sense of humor was still in tact. We quickly composed ourselves as the geneticist walked back to Makily's crib. He asked if we had any other family members that had any type of possible genetic issues. I did. My Grandmother had a little boy back in 1940 that died when he was three days or three hours old (I get different answers). He had half a kidney, cleft lip and palate, heart problems, lung problems etc. My Grandmother was told he looked so bad that she wouldn't want to see him. The geneticist said this was "noteworthy". He stated that the blood work for Makily should have been back at that point and he would check on it. He mentioned there were several different syndromes she could have and he just didn't know what it was without the blood work. I asked him the question I was dreading the answer to. "Is it possible she has no genetic problem and just has a cleft with some skin tags?" He said he doubted it, that it was unlikely. I had been holding on to the small chance that Makily would be normal until that moment. I let go of that fantasy....I felt an ache in the depths of my soul that no words can describe at that moment.
Allen and I went to eat lunch. We were talking and he told me he had no clue what the geneticist was talking about. What did all this mean? The only way I knew to explain things to him was to explain Downs Syndrome. How Makily could have something like that. I saw tears well up in his eyes and I realized then that until that moment he had thought Makily would be normal. I wanted to run screaming and crying out of there. Allen has been through so much in his life and I so wanted to give him a happy "normal" family. I had so terribly failed. Seeing the look on his face when he realized what I had already been assuming those six days was torture for me. I couldn't eat. That was a new problem I had been having. If you know me at all I love food, love to eat. That whole week I would stare and food and just become nauseated. My family forced me to eat as much as I could.
Anyway, after our awful lunch I went to go pump (this was another thing that was consuming me, I was attached to the milker all the time). I got there and someone was already in there. There was another "pumping room" on the 9th floor so I went up. I got in there, closed the door, turned off the light, got on my hands and knees in the floor and sobbed. I put a pillow over my mouth and screamed and sobbed some more. I kept saying "God please don't do this to me, please Lord I can't have a sick child....please God Help me, you know I can't do this, I don't have it in me, I am not strong enough, I didn't choose this path and I don't want to live this kind of life, please let her blood work come back okay, I am begging you God". I pulled myself together after about 10 minutes of this and I pumped again while crying. I went back downstairs and walked into the NICU. I noticed Allen was not at Makily's bed and quickly realized that it was shift change and parents weren't allowed in there for that hour. I started to rush out because I was afraid I would get in trouble for being in there. As I was walking out I saw the geneticist standing in a circle with Makily's doctor, 2 other doctors, nurses, social workers, and Makily's chart in their hand. They didn't see me, but I quickly came to the conclusion that "they knew" what "it" was. I suddenly felt like everything was going in slow motion, I could hear my heart beating...no pounding in my chest. I couldn't catch my breath. I ran down the hall looking for Allen, I was having an anxiety attack....I was shaking, my chest was heavy, I wanted to throw up. Finally Allen stepped off an elevator with the same frantic look on his face that I had. He said they had came to him and told him they had the results and were going to give them to us. My anxiety level was through the roof.....I called my mom hysterical and said you need to pray like you never have before in your life because they are about to tell us"......then I hung up.
Allen and I stood in the hall waiting for the doctors. I remember pacing and saying "please God, please God, please God" over and over....my mind was frantic. I knew the next hour of my life would change EVERYTHING forever and I was so afraid. I kept seeing people getting on and coming off the elevators, totally oblivious to the fact that my world was crumbling, they were living a normal happy life and there I stood, in hell. The world was going on with life and I felt like I had been kicked into some different reality. It was very strange. Finally the doctors came out and we sat down in this room with a long table. It was Allen and I, the geneticist, his assistant (she was an idiot), a social worker, two of Makily's nurses, Makily's doctor and some other woman. The geneticist began with these words "Makily has Trisomy 22, a 3rd copy of her 22nd chromosome." Then they handed me a "hand-out" if you will. I remember thinking "your giving me a hand-out, could you be any more lame at this moment?" I glanced at my nifty hand out and saw the words skin tag, cleft palate, heart problems, kidney problems....I had to stop reading. I asked the doctor what all this means. The next words he spoke felt like a dagger through my soul.
"Makily will be severely mentally and physically disabled."
My world stopped again, I began to cry and tell Allen I was so sorry, he was doing the same. I some how formed the words "will she walk?" he said most likely not. I then asked if she would talk and he told me "most children do not". Other than Makily dying I could not think of anything any worse he could have told me. I wanted to know how this happened. He told me that it could be just a spontaneous genetic abnormality OR one of us could be carriers and passed this to Makily. I asked if it was possible that is what took me so long to get pregnant and he said "yes usually babies with trisomy 22 are miscarried before you even know you are pregnant". I knew immediately at this point I was a carrier. The combination of the fact it took so long for me to get pregnant, my grandmother had a baby with the same problems, it was too much of a coincidence. A blood test a week later confirmed my this.
I was a carrier I had given this to Makily.
It was too much for me to handle.
I imagined Makily's life.
When he said the word SEVERE I thought what EVERYONE thinks a "severally retarded" person is like. I assumed she would be in a vegetable type state, she wouldn't know there was even a world around her. I imagined a child that just laid there and responded to nothing.
We went back into the NICU and stared at Makily. I had no feelings for her.....which made me feel incredibly guilty. I wouldn't have dared tell anyone that is what I was feeling at the time.
I was so ashamed.
What kind of mother is told she has a sick child and then emotionally shuts down and rejects her? They asked if we wanted to hold Makily.....she was still on the ventilator and had a UAC line in but I think our nurse felt sorry for us. I held her for a little bit and then Allen got to hold her for the first time. It was a very bittersweet moment.
My Mom arrived, Dad had dropped her at the front and he went to park the car. Allen went to go wait down stairs to meet my Dad and I stood with my Mom in the hall waiting for the social worker to open "the room" back up so I could tell my parents the awful news. I knew my mother was probably sitting on nails waiting to hear so I said,
"I am not going to make you wait anymore I know you are worried, Makily is retarded."
The word retarded kept echoing in my brain. I know this wording is so terribly harsh but I had no other words at that time, I was out of my mind. Just then the social worker came and let us into the room. We sat down and my mom said she didn't believe it. I was so bitter I said "well that is what they said and I believe it, I have to accept this and deal with it, I wish it wasn't true but it is and that is it". My mom insisted that Makily would walk and talk, we were both crying now. My Dad came in and I asked Allen if he had told my Dad...he hadn't. Great I get to do this again I thought. I looked at my Dad and said with tears in my eyes "she's retarded". I saw his eyes well up and he said "how bad?" I said "severe". He hugged me while I cried and kept saying "I'm so sorry, it will be okay".
This was the worst day of my life.
This is Makily the morning after she was born.
