Loss of Infant

[babymaddie]

Hi everyone. I'm new here--just found the site.

Mid-January this year, my husband and I discovered we were pregnant with who ended up being our first baby. Our first pregnancy had ended in a miscarriage at 13 weeks so we were a little nervous during the first 3 months this time around. My first appointment consisted of seeing the baby's heartbeat and my doctor pushing my due date back 4 days from what my menstrual cycle told us it should have been because she was measuring that way. Another doctor in the office didn't agree at my second appointment and decided to check for herself. She came to the same conclusion. After puking my guts out 7-8 times a day from week 6 to week 12 and 3-4 times a day from week 12 to week 14, I ended up losing 10 pounds in my first trimester. By week 18, I'd gained 3 of them back. At my 14 week appointment i had a quad screen, which tests for basic genetic disorders (downs syndrome, trisomy 18, etc). The only reason we did the testing was because insurance covers it and the office offered it to all patients...it was a simple blood test and to no surprise, the results came back negative. So far we were expecting a perfect baby. Week 18 was our anatomy scan. What was supposed to be an exciting day (we were supposed to find out what we were having) turned into the first sign that something was wrong...and a small disappointment when we couldn't find out if it was boy or girl because the baby's legs were crossed just right. The scan showed a 2 vessel umbilical cord, a condition known as Single Umbilical Artery (SUA). The immediate concern was Downs Syndrome but my husband and doctor and I were all reassured that everything was fine based on the results of our quad screen. We were referred to a women's specialist who did in depth scans just a few days later. I went into that office KNOWING my baby was perfect. I was wrong but we didn't know yet that I was deadly wrong. The ultrasound showed the 2 vessel cord and cysts in the part of the baby's brain that produced spinal fluid. Neither symptom alone really raises too many flags, and even together don't mean anything. They checked the baby from head to toe, inside and out and saw no defects. We met with a genetic councilor who explained everything to us. We were assured that there was a 99.9% chance we were going to have a perfectly healthy baby (still couldn't tell if it was a boy or a girl) but we were offered an amnio for our piece of mind. We declined the amnio because of the risks and told the doctors that when we came back at 30 weeks (which was when the specialist wanted to see us again) to revisit the issue. I did not want to take the risk that amnio would cause a miscarriage and then find out that there was nothing wrong with my baby.

At 27 weeks we splurged and got a 3D ultrasound done at a place about 45 minutes from home. We found out then and there that it was a girl and she looked perfect in those pictures.

At 30 weeks we went back to the specialist. The cysts in her brain were gone (which he told us would be the case when we saw him the first time). The only thing that concerned him was her size. She was measuring in the 16th percentile for her gestational age. Everything else looked perfect. There was no cause for concern. He wanted to see us again at 34 weeks.

This is where the stress really began, but never once did I think that there was something wrong with my baby. We went for the 34 week appointment at the specialist. At this visit she was only measuring in the less than 3rd percentile....3lbs, 4 oz was there estimate. Still, everything else looked fine. The specialist and my OB-GYN decided that for the rest of the pregnancy I would see them each once a week--I would go to the specialist once a week for ultrasounds to measure fluid and blood flow, and I would see my regular doctor for non-stress tests where I had to lay on a table for 30 minutes strapped to monitors measuring the baby's heart rate and my contractions (which I wasn't having). The first test went GREAT. My doctor was very happy with my baby's health. The second didn't go so well but my doctor was reassured by an ultrasound showing everything was fine...That was Friday, August 27th.

Sunday, August 29th changed everything. We went to brunch like a normal Sunday and ran some errands. When we got home I did my kick counts where I'm supposed to lay down and count the baby's movements. She was supposed to have 7 movements in 2 hours....normally we blew through it in less than 20 minutes. On this day at the 2 hour mark we were at 4 kicks. I called my doctor and she said to head to the hospital, that everything was probably fine, we were just going to check it out. We got to the hospital at 4:45. My doctor decided that the baby wasn't moving enough for her and it was time to get her out. I had an emergency c-section and Madeline Rose came into this world at 5:28 that same evening, weighing 3lbs, 9oz and measuring 16 inches long.

No one was prepared for what happened next. Unlike most mom's, I was not handed my baby. I didn't even get to see a glimpse of her. She was whisked away into the next room where she was intubated and brought up to the NICU.

When I got out of surgery, my husband and I learned that they thought my baby had Trisomy 18 but we wouldn't find out until Thursday. She appeared to have heart failure and was having a little bit of trouble breathing. They would not let me see her until I could move my legs...which I did as soon as they brought me to my room. I didn't know they still existed, but I moved them. When I got to her bedside all I was able to see were her feet because I couldn't stand still (like I said, I didn't know the lower half of my body was still there). I refused to worry yet. I KNEW she was fine. She was perfect to me.

Over the next few days we discovered she did in fact have Trisomy 18, and her heart was not something that could be lived with. It was half the size of her abdomen. Her heart was big that it was restricting her breathing...one of her lungs wasn't able to function because her heart was basically disabling it. She remained on the ventilator for the full 5 days of her amazing life.

During our time in the hospital we spent every available moment with her, reading to her, talking to her, singing to her, taking pictures and video of her, and crying over the life we knew she would never have. We got to know our daughter well...a feisty little thing she was, a ball of fire (which I jokingly told her explained all of the heartburn I had during her pregnancy). She actually ripped her breathing tube out of her throat twice in those 5 days....crazy kid I love her so much.

We had her baptized in the NICU on Friday, September 3rd, in the morning with all of our family there. Everyone got their only chance to hold our precious little angel with cameras and video capturing every moment.

After lunch, we went home and napped and went back to the hospital at about 6:30. The doctor told us what to expect, that they were going to give her morphine to keep her comfortable and that she would gasp for air a few times before passing away. We didn't know how long she would have. It could be as little as 20 minutes or as long as 2 days. We were prepared to stay in that NICU room for at least the night. at 7:00 we saw her face without tubes for the first time. She was absolutely beautiful. There was nothing wrong with her externally; it was all internal. We had a little over 2 hours with her, passing her back and forth, singing to her, reading to her, letting her know that it was okay...that she didn't have to struggle anymore, or suffer anymore, that we would be okay and we would love her forever. She died very peacefully in my arms at about 9:15 pm September 3rd.

I miss her. I miss feeling her kick inside of me, i miss her fingertips in my ribs, I miss her face, her toes and her fingers. I miss her opening one of her eyes to see who was talking to her. I miss the way she made me feel. She made me a mommy and I will never forget what I felt when I finally got to hold my baby when she was 3 days old. No one can take away the joy I felt in those 30 minutes.

Almost a month later, I still find myself reading her books out loud at night when I'm alone as if I'm reading to her and I kiss her bear goodnight every night since I can't kiss her. That little girl changed my life during her short 5 days with us...they were the BEST and WORST 5 days of my life and will be that way forever. I can't think of anything that will be better or worse.

[westleysmom]

I'm so sorry for the loss of your Maddie. You have been through so much in the past several months, its no wonder that you are emotionally spent. My son was 6 days short of his 21st birthday when he died in January of this year, and that was not long enough for me to have him with me. Parents expect to have their children forever, so anything shorter than that is never enough. I have been coming here since June or July and it has helped me so much to be able to talk to other people who understand that I now have a hole in my heart. I hope you will continue to come here for comfort and support because that is what you will find. You will always be her Mommy and you will see her again one beautiful day. Take care of yourself and know that you are not alone.

[kmb22]

I'm so truly sorry hear of the loss of your sweet little girl Maddie. I've only recently lost a child as well, my first born son Shawn, at the age of 25. It's only been a bit under 3 weeks for me so I'm afraid I don't have a lot to offer right now but, wanted to say you've found yourself among a wonderful, caring, group here. The outpouring of care and concern has helped me a great deal and on the many sleepless nights I've had I know, by coming here, I'm not as alone as I think.

<3 Karen

[babymaddie]

I'm so sorry for the loss of your Maddie. You have been through so much in the past several months, its no wonder that you are emotionally spent. My son was 6 days short of his 21st birthday when he died in January of this year, and that was not long enough for me to have him with me. Parents expect to have their children forever, so anything shorter than that is never enough. I have been coming here since June or July and it has helped me so much to be able to talk to other people who understand that I now have a hole in my heart. I hope you will continue to come here for comfort and support because that is what you will find. You will always be her Mommy and you will see her again one beautiful day. Take care of yourself and know that you are not alone.

I'm so truly sorry hear of the loss of your sweet little girl Maddie. I've only recently lost a child as well, my first born son Shawn, at the age of 25. It's only been a bit under 3 weeks for me so I'm afraid I don't have a lot to offer right now but, wanted to say you've found yourself among a wonderful, caring, group here. The outpouring of care and concern has helped me a great deal and on the many sleepless nights I've had I know, by coming here, I'm not as alone as I think.

<3 Karen

Thank you both. I'm sorry for your losses as well. It's a terrible thing when someone isn't given the chance to live up to their full potential. It helps to know that I'm not alone, although I feel horrible that anyone has to go through something as devastating as losing a child. I feel so helpless to the situation, so empty inside (literally and figuratively)--there are times I lay on the couch and put my hand on my stomach waiting for her to kick me. It only takes a few seconds to remember that no, my baby was born. she was born alive and died. She made me a mom, my husband a dad and our parents grandparents.

[ModKonnie]

What a beautiful story. Words just won't come to me to describe how utterly sorry I am for your loss.

ModKonnie