Faces of Loss, Faces of Hope

Amanda
Mom to Aubree Hope

February 22, 2010
Shelocta, PA

We were a little shocked when we found out we were going to have another baby after we sold our house in about 4 days and had to move in with my parents until our new home was built. After we got through the initial shock we were very excited to be adding to our family since we wanted another child anyways. My other children, Carley and Parker, were very excited to have a baby on the way.

My pregnancy was very typical in that I was sick for the first trimester and then just tired through my second and beginning of third trimesters. I wasn't gaining as much weight, but I thought that it was a result of being so busy chasing after a 3 year old and an almost 2 year old. I went for my regular monthly appointment on a Monday and inquired about another ultrasound. My doctor scheduled me for one at the end of the same week on that Friday.

We went to the ultrasound, and I was a bit nervous about it for some reason. I had a bad feeling about this baby all along, and I was just hoping that I was being paranoid. It took the lady about an hour or so to do the measurements because the baby was a bit crazy! She then told me she was going to need a few minutes before she got my husband. I waited for over 15 minutes before she came back with the Radiologist. I was pretty panicked in the meantime. He told me he was concerned about the baby's heart, I had extra fluid, the umbilical cord was a two vessel cord instead of the typical three, the baby was measuring small, and there was a cyst on the baby's brain. This was all too much for me to hear...We were referred on to West Penn Hospital in Pittsburgh to get a Level 2 ultrasound to look at things further. I was in complete shock and was horrified to think that something could be wrong with my beautiful baby.

We went to the Level 2 ultrasound on February 1, 2010. We first met with a Genetic Counselor who told us what they would be looking for on the ultrasound, and she took a family history which was very clear! After we talked to her for a bit we all went in for the ultrasound. We got to see the baby in 3d which was really neat since I hadn't experienced that with any of my other pregnancies. After the technician was done with what she needed to do the doctor came in to talk to us about what they were seeing. The best news was that the fluid level was normal and the baby's cyst was gone! The doctor then went on to explain how severe they thought the baby's heart might be, and they thought the baby might have rocker bottom feet. This of course meant nothing to me at the time. After asking what that meant she mentioned the one thing you never want to hear as a parent...Trisomy 18. We wouldn't know for sure unless we did amnio which I was very adamant against since it was a risk to the baby. We decided to just see a Pediatric Cardiologist in the meantime to see how bad the baby's heart really was.

We left the office completely devastated. They had basically told us that our child was probably going to die, but they just didn't know when that would be. We met the Pediatric Cardiologist on Wednesday of that week, and she confirmed that the heart was really not in good shape. She recommended the amnio so we could know for sure how to handle the baby after birth because if it was not Trisomy she would need heart surgery within the first week of her life. She had about four main problems with her heart so it would require about three surgeries over the course of the first three years of her life. The first surgery only had about a 50% chance of survival rate with it so that alone was difficult to hear. We called West Penn on our way home to schedule the amnio for the next week.

We got the amnio done on February 8, 2010. They ran an extra test to get the results a bit faster for us which was a relief to not have to wait the full two weeks it can take. We decided to find out the sex of the baby since we wanted to name the baby for as long as we had him/her. I of course knew it was going to be a girl so when they said it was I was not surprised at all. It was going to be my Aubree Hope...Such a beautiful name for such a beautiful little girl in my opinion. Sure enough two days later we got the news that we had been expecting...she was a full Trisomy baby. Now we just had to love her as long as we had her.

Aubree was an extremely active little baby. She was always kicking me and moving all over the place. I loved feeling her inside of me. I felt so blessed to be her mother. It was so scary walking around knowing that any minute could be her last though. I tried not to think about it that way, but it was always at the back of my head so I just tried to be thankful for each day that we had together.

I found out that there might be a problem when I was about 27 weeks pregnant, and over the course of the next four weeks we learned as much as we could about Trisomy 18 and we tried to prepare our families for what was to come..

I never thought in a million years that she would come early or that I wouldn’t get the chance to meet her alive. She was really active as usual on Friday evening running her little feet across my belly. I always loved feeling her little feet since they were so small. I woke up on Saturday morning and I tried to feel her moving around but I felt nothing all day. I started to panic a bit, but I decided to just wait until Sunday to see if maybe she was having a lazy day. On Sunday morning I still wasn’t feeling her so I made the call to my doctor. He thought that maybe she was just being lazy, but I convinced him to let me go get hooked up to the monitors at the hospital just to make sure. My intuition told me she was gone already, and I didn’t think I could handle not knowing for another day.

I went to the hospital around 1:00 or so and they hooked me up to the monitor. The poor nurse looked for half an hour and heard nothing. My doctor came in and hooked up the ultrasound equipment to get a good look at her and sure enough her heart had stopped beating. I was devastated that her little life was already over. She never even had a chance to live. We decided to just go ahead with the induction because I didn’t think I could handle walking around with her for another day or so knowing she was already gone.

At about 2:00 they did some kind of pill to stimulate labor since my body was not ready at all. They said that it should take at least 3-4 pills for labor to really start. As soon as he inserted the pill I was contracting within minutes. I guess it was a little gift from either Aubree or from God himself. Another gift I didn't mention was that Aubree turned for me into the head down position from the transverse position. I decided that I didn't want to feel any pain with this labor so I decided to try Stadol, and I didn’t like it at all because it made me feel extremely tired and almost dizzy. The pill had to be inserted every 4 hours so we had a long night ahead of us. I really wasn't comfortable at all since I had a lot of pain with contractions that were back to back. I requested an epidural for the pain because it was getting to be too much. In the meantime I was feeling sick to my stomach because it is a side effect of the pill that was causing the contractions. They did put me on meds. for that thankfully so that at least went away. I went to almost 1 cm. with the first pill and then 2 cm. with the second pill. The third pill was inserted around 10:00 so we decided to try to rest a bit. I ended up getting a really bad headache that was due to a high fever from the darn pill...they gave me Tylenol to help, but it didn't take away the headache unfortunately.

I heard a little noise and felt a popping sound so the nurse decided to check me. I was at 5 cm. at around 1:30. They said that my water was about to break so it would all happen very quickly from here on out. We called my mom so she could be there for the birth. I was very tense and scared since I wasn't sure I was ready to see her or to face the whole event. I kept asking God to give me strength to do what needed to be done...At around 1:50 or so Dr. McCoy came in and they saw her head. They broke my water and one half of a push she was out at 1:57 am. She was so beautiful and so tiny. She had a full head of dark hair. My mom got there right after her birth. They wrapped her in a blanket and finally gave her to me to hold. I was amazed at how perfect she was in every way and how much she looked like her big sister Carley. I can't imagine how much hair she would have had if she had been born full term with as much as she already had at 31 weeks! She was beautiful and really had no physical signs of Trisomy at all. Her ears were the only little flag because they were down a bit farther on her head then they should have been. As we looked at her little 2 pound, 13 1/4 inch body we took in everything about her.

We spent most of the day holding her and loving her. I know that might sound a bit morbid, but it was so beautiful to just hold her and get to spend some time with her. I never wanted to let her go. She did have the umbilical cord wrapped around her little leg three times so that is why she ended up going as quickly as she did. As horrible as this whole experience was it was made a little bit easier by the hospital staff. They were so amazing with us and with her. They treated her like she wasn't gone.

We were put in a room at the very end of the hall so we wouldn't hear any babies crying on the floor. We had a photographer come in from Now I Lay Me Down To Sleep to take some pictures of her around 9:00, and she was so wonderful. Our Pastor came in and anointed/baptized her for us. It was a very special moment for all of us. Her birth story is one I will always remember because she was such a blessing to me even if I only had her for a short time.

We held the Memorial Service for Aubree on Saturday, February 27th at 11:00 at the Ringgold United Methodist Church. It was very simple with only about 14 people in attendance. We wanted to keep it small because that is really all I could handle at the time. We thought it would be appropriate for her to be buried at that cemetery because it is really in the place where my life began. Mike and I have decided to also be buried right next to her someday.

The flowers were beautiful in that they were red tulips which are my favorite of course. I am just assuming they are hers as well since she is such a part of me, and the red tulip means true love so it is very appropriate for her. Our Pastor did a beautiful job of honoring her in every way. We had two songs played in honor or her. The first one is probably the most beautiful song in that it captures exactly how I feel about her. It is called “I Will Carry You” by the group Selah. It caused a lot of tears though due to how heartfelt the words are. The other song “Visitor From Heaven” by Twila Paris was a perfect song to end with because it sends her off peacefully to her final resting place.

After the service was over Mike and I just spent some time with her by ourselves. We told her everything we needed to say to her until we meet again. It was so hard to leave her there. I wanted nothing more than to pick her up and run off with her so I could keep her forever. I know that it was just her body, but she is forever ingrained in my soul. We all had items that were placed in her casket as gifts of love to her. My mom and dad gave her a Baby Be Blessed pink lamb with her name on it and the scripture verse from Matthew 19:14 on it. Mike’s mom and dad gave her a pillow to lay her head on with hearts on it to symbolize all of our hearts and a butterfly just for her. My sister Amber and her husband Dan gave her a pink cross that Dan made with her initials on it, and my other sister Ashley and her husband gave her a Mother and Child angel. Our gift to her was the red blanket that she was wrapped in that my mom and I had made for her. Every gift was so beautiful, and I am so thankful that she is surrounded by such love from all of us.

After we had lunch with the family Mike and I went back to her burial plot to see just where she was placed since we couldn’t be there for her actual burial due to the snow. The tulips that we had chosen for her were placed on top of her grave, and even though they were covered in snow they were so beautiful, just like my baby girl. I need to take my other kids there at some point to see where their sister is buried. I just can’t take them there just yet. Carley is having such a hard time with all of the sadness around her, so I didn’t want to make it any worse. Some day she will be ready…

As for now we are just trying to keep going. God has been providing peace in many ways to us. I can’t say that this has been easy at all, but I know that she is in a much better place where there is no pain or suffering. There are days that I don’t want to get out of bed, and there are days that I feel like I can’t breathe without her. I know each day will get easier and easier as time goes on, but right now it feels like my heart is broken into a million tiny pieces and I have no idea how to put it all back together again. God will carry us through this. He has brought us through so much already, and he is certainly not going to abandon us now.

Mike and I have grown up so much in the past four weeks. It is amazing how quickly we can change our perspectives on life. I am no longer afraid of death. In fact, I am jealous of the person who gets to meet her first. I have truly realized that we should never take anything or anyone for granted. Love each day like it is your last because you just never know.

I know this experience has probably been the most difficult thing I have ever gone through, but I am so thankful that I got the chance to be her mother even if it was just for a short while here on Earth. I am so proud of her, and I am so thankful for all of the lessons she taught all of us. She truly was a gift from God, and I have no doubt that she is a beautiful angel right now watching over all of us with a smile on her face. She knows how much she is loved. She will always be perfect to me in every way, and I am never going to forget her in any way, shape, or form. She has become ingrained into every inch of my soul. I can still remember what it felt like to have her little feet moving across my belly, and I think that is something that will continue to bring a smile to my face for as long as I live

Amanda blogs at www.ahb-alittlebitofhope.blogspot.com