Family Update Feb 2006 Gabriella's New Baby Brother!

Update  2-27-06 Lucian Michael Harmon Feb. 21, 7:20 p.m.  7'7  20 1/2in. We are doing so good. We just had our little baby boy last Tuesday. 7'7 and 20 1/2 in. He is a good baby. We are so blessed.  Ambre

Gabriella Rose Harmon was born October 6, 2004. She had Trisomy 13 full. Which we never knew until birth. She weighed 7'6, looked like a "normal" baby. But seven days in the hospital, told us a different story. She had major heart problems. She had trouble eating and breathing at the same time. She was with us for a month and 26 days. She died on December 1, 2004. Her brother Gage (9 years old) went to school and kissed her that morning. She died two hours later in our home. We miss her and think of her daily. Shawn & Ambre Harmon, 13343 Cruse Rd. Carterville, IL, 62918, boss2burr@aol.com  Scroll down the page to view a Poem  written by Ambre Harmon   "Sometimes"

Family Update 6-10-05
Gabriella would of been eight months on the 1st of June. I wonder what she would look like. When I see a baby around her age, I wonder if Gabriella would of done that. It's not as hard to think of her now. I don't cry all the time, and I can laugh at times. I know that God has a reason for everything. I'm sure I will know the reason for this someday. Just not now. I miss Gabriella. I think of her every day. I remember that she was sweet and loved to be cuddled. Her Daddy is doing better. He laughs now too. He gets sad a lot and cries sometimes. But, it's getting better. I found Gage in her room the other day. He was messing with her nick-knacks. At first I wanted to tell him to stop, but I didn't. I watched him for the longest time, he just looked at everything. He opened her drawers and looked at her clothes. He was crying the whole time. I've never seen Gage cry over Gabriella. He keeps everything inside. I guess a ten-year-old would. He never talks about her, only when I bring her up. So, I walked away. A bit later he came up to me and said he missed her crying. That got me going. I miss her cry too.

I'm just glad my family is dealing with it and trying to move on the best way we know how. We will never forget our angel Gabriella. She was here a short time, but she gave us so much. All of us are different, in a good way. We are going to try again in July. That would be nine months. I think that would be a good time. I hope it's a girl. We all wanted a boy with Gabriella but, now we all want a girl. God Bless.

Ambre: Mother to Gage(9) & Gabriella

"What we have once enjoyed we can never lose...
all that we love deeply becomes a part of us."
-Helen Keller

Our Baby
by Ambre Harmon

This story is about our daughter who changed our lives forever.

Gabriella Rose was born with Trisomy-13 full. I've learned that it's a genetic disorder that effect about one out of ten thousand live births. Most mothers find out by sixteen to seventeen weeks of pregnancy. Some mothers would have decided to terminate the pregnancy. In some cases, the doctors can't explain why a woman miscarries a baby, it could be from genetic malformations. Our bodies reject an abnormal fetus. My pregnancy went perfect as any normal couple's would. We didn't know any thing was wrong until we had her.

My husband, Shawn, was so excited about his first baby. When our twenty-week doctor visit was near, he was bouncing around all day. Of course, my nine-year-old son, (Gage) and Shawn were hoping for a boy. We found out it was a girl. I was wanting a boy too, but a little girl was perfect. We also learned that she had an extra digit on her left hand. I will never forget how scared we were. Our doctor told us that everything would be fine. If they had found any other signs of a disorder, like heart and brain malformations, then we would have had more tests done. I did ask him if this was uncommon and he said no. He stated that he had some babies with extra digits, and with one lady, all of her children did. He said not to worry and that we would tie it off after birth. I asked if we could do some extra blood work. Everything came back fine. So, we decided not to tell anyone about Gabby's hand. We pushed her hand out of our minds and started everything to prepare for a baby. Her room was all in pink and light purple. Butterflies were the theme. It looked so pretty in there. I worked as a union driver for a library up until my seventh month. Then, I enjoyed my baby growing inside of me. I dreamed about her every night. Shawn and I made so many plans and dreams for our wonderful baby girl. We decided to name her Gabriella Rose, Rose was after his grandmother who had passed away before we were married. It was so perfect. But like most moms, I still worried about her hand, I'm sure Shawn did too.

On October 6th, my water broke. It was a day before my due date. I went fifteen hours of labor with Gabby. I pushed her out in twenty minutes. She weighed 7'6 and 21in.long. Shawn was so calm and happy. When she entered this world, there wasn't a cry. All I heard was silence in the room. I had this funny feeling something was wrong with her. They took her over to the warming table and the nurse said she swallowed some fluid. I saw that Gabby was this weird grey color. Our doctor said that we would tie the extra digit off. That's when the nurse informed him that Gabby had extra digits on both her hands and feet. We just started crying. Then, I noticed that something was wrong with her head. She had three bloody sores on the top part of her head and there was no hair there. I tried getting out of bed to look at her, but the doctor wouldn't let me. Shawn got to hold her. She was having trouble breathing. He also noticed that one of her eyes was white inside the pupil area. I got to hold her for a minute or two. The nurse wanted me to try breast feeding her. I was looking at her and I could tell she wasn't breathing very well. They end up taking her to the nursery.

About ten minutes later, the nursery doctor came in and said that they found some things wrong with her. He said that she had a cleft palate, and that she was still having trouble breathing. He also said that he wanted to take some blood, and that it was a simple cut to her cord. After five minutes, he was back saying that it broke open when he did it. Gabby's bowels came out of her cut. She needed more blood, and St. Louis Children's Hospital was on their way to air lift her. I wanted to jump out of bed and freak out on the doctor. He told me he didn't know why it happen or what was wrong with her. My husband just stood there and cried. He started getting our stuff together, while I got myself together. Finally, Shawn looked at that doctor and asked him what was really wrong and the doctor said in an angry tone, "If you were listening then you would have understood that we don't know." We stood there in shock. I couldn't believe this doctor's bedside manner. Here we were, my husband and I, wondering what was wrong with our little baby girl.

After I got myself half way together, the nurse came in and asked if I wanted to see my baby. Shawn was still trying to get a hold of his brother. My mother and I went to see Gabby. She looked so cute. That was the first time I really got to see her. She still had blood on her from the birth, the top of her head looked bad, and she had a bandage over her tummy. I touched her and tried to kiss her, but she had this weird plastic cover over her head to help her breath. Then, I noticed that she had blood coming out from beneath the bandage. It was running down her side. My mother used to be a nurse and when I looked up at her, she had this scared look on her face. We called the doctor over and asked him if that was normal. He made us leave without any reasoning why.  My mother and I walked out of the room. Shawn was standing there. When I told him what just happened, I thought he was going to punch the lights out of the doctor. We all went back into our room and waited. My mother was trying to give us reasoning why or what could be wrong. She was trying so hard to get us not to worry. But, I know deep in my heart something was very wrong with our baby. My son's grandmother and her husband had just walked in, when I heard the helicopter land. Shawn's brother and wife came in about the same time. Shawn went to go see Gabby, while my mother and Gage's grandmother got our stuff together. I wasn't staying at that hospital without my daughter. The team for the air lift came in after fifteen minutes, they told us that she was stable and breathing a little bit better.

I think God heard our prayers. Everyone got together and looked at Gabby in her little warmer. She was sleeping and pink now. She looked so much like Shawn and his older brother, which I couldn't stop saying the same thing over and over again. Stress can do weird things to your body and mind. Everyone else just stood there in shock, while Gage's grandmother and I cried our little hearts out. We were all so scared. Gage didn't know what to do or say. Bless his heart, I'm sure he was scared like we were.
The air lift team took Gabby to the children hospital. Which is about four hours away from out little town in Illinois. We left the hospital and went home to get our stuff together. I got a phone call from the hospital saying that they had to do surgery on Gabby. Her bowels needed to be put back inside her.

By the time we got to the children's hospital it was dark and raining. I thought that was a sign that something had happened to her. My mother, the whole way up to St. Louis, was so positive. When we got to the baby ward, we had to wash our whole arms and take off our jewelry. It was scaring to be there. I should have been working on nursing my baby, not washing up in the NICU for babies. I was so nervous that I forgot my wedding ring. It wasn't there when we came back.

We walked down this long hallway. One room after another with babies in them. I have never seen anything like this before in my life. I didn't even know what to think or feel by then. As we walked up to the room Gabby was in, I didn't even know which baby was mine. There were four babies in the room with her. As we walked in, a woman walked up to us and said that her name was Dr. Hall. She was the neonatologist in the NICU. She took us to Gabby, who was in the first bed to our right. My baby didn't even look the same. Gabby was swollen and red. She was on a breathing machine that breathed for her. She had an IV, and another tube coming out of her mouth for fluid. She was so sweet looking. Dr. Hall told us that she thought Gabby had a genetic disorder called Trisomy 13. This means that she had a extra #13 chromosome. She said that babies with this disorder have heart problems, breathing problems, extra digits, and some have brain malformations. Gabby had everything down her list, but the brain malformation. Gabby had T-13, double outlet right ventricle, cleft palate, repaired omphalocele, cutris aplasia of the scalp, and polydactyly. Babies with T-13 are very little and hardly ever make it past a week. If they do, the babies pass away between three to six months.
Dr. Hall told us that after the final test came back, they would know for sure what type she had. There are three different types of Trisomy 13. After three days, we find out she had the full T-13. It's the most common one. Her extra #13 chromosome was standing by itself. It was from a accidental occurrence. The two #13's did not separate or disjoin as they should. Therefore, either the egg or the sperm had twenty-four chromosomes, the usual twenty-three plus the extra chromosome 13. This process of unequal separation of chromosomes is called non-disjunction. The extra chromosome in T-13 probably arises during the formation of the egg or sperm "prior to conception."

The next question in my mind was that it was me. There are so many sperms and only one egg. But I was wrong, thank God. It doesn't pass from the parents, it "just happens." Which means that our next children will not have this disorder. We have a 99% chance of having a normal baby after Gabby. I guess that was going to make me feel better. Well, in a way it did. We didn't do anything to make this happen. It just did. The team of doctors couldn't even understand why Gabby made it through the birthing process. She also weighed a lot more then most babies with T-13.

I noticed right away something was wrong with Gabby. She couldn't eat without breathing different. She would eat a little bit, then have trouble swallowing. She was very fussing. You couldn't have bright lights on, no loud noises, or even our nurse talking would upset her. We got to take her home after seven very stressful days in the hospital. We talked to the heart specialist on the day we were suppose to leave. He told us that her heart was the main concern. She would start to get worse in about a month. I keep thinking, "Does that mean we only get a month with her." It was scary, and I really didn't want to believe him. So, we took her home.

The first couple of weeks went very good. She was a difficult baby to feed, but I didn't mind. She was my daughter. We would take pictures of her just sleeping. We had nurses that came twice a week to check on her. She was on digoxin for her heart, lasix so she won't get swollen again, and potassium to put back in her system the lasix took out. The sores on her head started healing. Gage got to hold her and play with her like any baby. She started to smile a little bit. The only thing was her breathing when she ate. She was still taking breast milk. She didn't eat much at a time. She would pause with her breathing often.

About four weeks after Gabby was born, we had our first really scare. Shawn was feeding her and she got choked up. (which happened a lot). All you would do is move her or kind of shake her little bit. Well, this time it didn't work. I was sleeping in our room, when I heard him yell her name. I jumped up out of bed and he was running in our bedroom, yelling that she wasn't breathing. Then he gave her mouth to mouth. All at once her eyes opened little bit, then she throw up the milk. The heart specialist was right all along. I prayed that God would save her. I started to think she wasn't going to make it.

After that happen, she was never the same. She had problems breathing all the time. When she ate, cried, got upset, when the dog barked, and even when to many lights were on. It was so sad to watch my baby always uncomfortable. You could tell she didn't feel good. She started to get pale, and she was getting weaker. We had a check up with the heart specialist. When we were in St. Louis, we talked to Dr. Hall. She told us she thought it would be soon. Gabby had two of her breathing spells when we were there with Dr. Hall and the heart specialist. He told us that she had two holes in her heart and that her main artery was not flowing at all. I just sat there in shock. I was so numb by then. We couldn't get any sleep because we thought she would die in the night. So, we sat by her all the time.

I remember praying all the time to save our baby. I sat and watched her suffer for two whole weeks. One morning I noticed that my breasts were not as full, so I tried to pump and nothing came out. I told Shawn my milk had dried up and that we needed to get some formula. Gabby woke up from her nap, I could tell something was different with her. She would just look at me and cry. I had a little breast milk left, so I tried to feed her. She wouldn't eat. I tried and tried to get her to drink just a little bit. I finally got her to suck. She got choked up and quit breathing again. It took awhile to get her to breath. I was so upset and angry with everything that was happing to this sweet, innocent baby. I told Shawn that it was going to be sooner then we hoped.
Two days after that, she quit eating all together. I couldn't get her lasix down her. So, she got very swollen again. I finally called Dr. Hall and tried to get her to understand that Gabby was in pain, and that she needed something to make her comfortable. I told her I didn't care if it made her sleep all the time. At least, she wouldn't cry and moan. Dr. Hall gave her morphine. We gave her morphine every time she woke up. She would just look at us with this peaceful look of understanding that we were helping her. We just sat there and watched her. She would stare back at us. So, all we could do was make her comfortable. We put all her favorite toys in her playpen, and played her CD that she loved. Every time we checked her diaper she would stop breathing. Her kidneys failed. She had oxygen on her to help her breathing. We ended up not moving her at all. She just laid in her playpen and slept a lot. I missed holding her and her smile. For two days this went on, Shawn and I just sat there and tried everything to keep her calm. We didn't sleep or eat. Gage stayed in his room. He was scared of her by then. He couldn't take watching his little sister die. She was a little angel with brown hair and brown eyes. Her eyes were the darkest brown, they almost looked black. No one in my side of the family had eyes like Gabby, but my grandmother.

The next night she would not sleep and she started crying all the time. The morphine wasn't helping anymore. We finally got her asleep around five or six in the morning. Gage had to be at school at eight. We woke up late that morning. It was a Wednesday, the 1st of December. Gabby was still sleeping so, Shawn had to take Gage to school that morning. Gabby woke up right after they left. She looking so upset and like she was in a great deal of pain.I ended up picking her up and hugging on her. She acted really weird and she would quit breathing for minutes at a time. I called Shawn on his cell phone and told him I thought it was time for her to pass on. Shawn flew home to be with her. The nurse showed up about the same time.

Gabby wouldn't quit crying. I just gave her morphine and she still cried. She would quit breathing, then start again. She was so uncomfortable that I gave her an extra dose of morphine. She calmed down and laid there. She would watch Shawn and I. She stared at us the whole time. We took turns holding her and loving on her. The nurse thought she had passed once, then she started breathing again. She was in a daze. We just sat there in shock and watched our daughter take her last breath.
Gabby passed away at 1:25pm, in her Daddy's arms. She took five hours to die. It was horrible to watch her suffer for so long. I prayed that God would just take her. I believe that Gabby is in heaven with Shawn's mother. I can picture in my mind her holding Gabby. She is happy, warm, and can eat without discomfort. It makes me feel better. I think back at that day, and I can't even remember details of her death. God is helping me deal with her leaving us.

I miss her and I love her with everything I have in me. She has taught me so many things about life and God. I know He helped Gabby make it as long as she did. She might have died any time before that. We had eight wonderful weeks with Gabby. They were stressful and hard, but I enjoyed my daughter and everything she brought to this family. I know some day I will hold her again. I thank God every day for the time He gave me with her. I miss her more as time goes by. I see all these babies around our town, and it hurts really bad. I want her back, but I know this is selfish for me to think that. It's like everyone doesn't bring her up anymore. She would of been five months on the 6th of March, 2005.
I will never forget or stop loving her. Her Daddy and I go to her grave site every Sunday, we bring her fresh roses too. I know that she is looking at us with Shawn's mother. They are smiling at us and they know we miss them both.

In Memory of:
Gabriella Rose Harmon
October 6, 2004
December 1, 2004

"The Lord is the strength of my life"
Ps. 27:1

My breath died with yours!
My heart stopped with yours!
My life ended with yours!
Nothing is left to me!
Except the love you brought,
always, always,
I shall have your love. . . .
-Joan Walsh Anglund,
In memory of:
Todd Emerson Anglund
1952-1992

Gabby, Maria, Katie, Elizabeth, and Ruth, playmates in heaven.

Shawn & Ambre Harmon, Click here to E-Mail submitted: 2-10-05