Thursday, November 13, 2008

Chloe Ann's Story

In April of 2008 I got the greatest news a person could ever get---I was pregnant! I was so excited and could not wait for my first OB appt which would be May 12, 2008. I was so happy to see that little dot on the ultrasound and kind of sort of hearing that little heartbeat for the first time. The next couple of months went pretty well. Listening to the heartbeat each month made me smile ear to ear. Chad and I had decided early on not to find out whether we were having a boy or a girl because we wanted it to be a surprise as we did not do this for our first two children (Destiny 4 and Eric 2 1/2). On Aug. 6, 2008 I had our regular OB appt and then down to Maternal and Fetal medicine for our 20 week ultrasound (even though I was only 19wks6days). The ultrasound seem to be going fine and of course the sonographer tech was not allowed to answer questions or give any information. I got to see my baby's little hands and feet and I was so happy to see my little baby. Then the doctor came in and started doing her own ultrasound on my baby. I will never forget the look on the doctor's face or the tone in her voice when she looked at me and grabbed my hand to tell me that it seems there is something wrong with the baby. I started crying before she even started explaining. Mind you I was all alone with just my two children with me. She then started to explain that she suspects that it is a form of Skeletal Dysplasia that is not compatible with life and said we could do an amnio to determine for sure if it was Thanatophoric Dysplasia. Of course I didn't know what to think so I called Chad and had the doctor explain it to him and of course he said we needed the amnio to make sure. Having the amnio never changed our minds once about trying to carry this baby to term. Given the circumstances I asked the doctor if she could please tell me whether it was a boy or a girl. I was happy and sad when she looked and most definitely we were having another daughter. Instantly the name Chloe Ann popped into my head like a sign from God that it was her chosen name. I had the amnio done about 5 min later and was told that it would take 7 to 10 days to get the results. As it turned out it only took 7 days for the results to come in and once again when the phone call came in I was all alone again with just the two children. It was positive for Thanatophoric Dysplasia. I felt my world falling apart to know that I was having a daughter that God would not allow us to keep with us. My prayers turned from asking God to let the tests come back okay to asking Him to allow us to at least have some time with her while she was alive. I started having doctor appts every two weeks. One with my regular OB where I got to hear Chloe's heartbeat even though I was scared that one day was going to come that she would be able to find one and the other with the high risk doctor where we had ultrasounds done. I had asked to start having 3-D ultrasounds done so that I could see her beautiful face and to my amazement I got 3-D ultrasounds every month. This continued until Oct. 16 and that is where the doctor said that she had a little too much fluid and I would need to come see her again in 2 weeks. I went out and made my appt for Oct 29 thinking full heartedly that we would make it to that day. Well Chloe had other plans. On Oct. 22 (30wks6days) I realized that Chloe had not moved very much in the last 3 days so I called the doctor to get some medical advice and actually wanting reassurance that all was okay. They told me to come in for a non-stress test to make sure was all okay. I went in immediately (once again by myself this time no kids with me) and they did an ultrasound. Chloe Ann only took 4 breaths in 30-45 mins of watching her on ultrasound. The doctor had the nurse look up the percentage of children being born with TD1 being born alive and stillborn. The chances of stillborn were higher and I wanted to see my little girl alive. They then put me on the machine to check to see if I would be able to go home and come back the next morning to deliver (and once again bad news on my part), but that came back as a big fat no. I was having regular and strong contractions and the doctor was worried about me having another uterine rupture. I then called Chad and told him he needed to not go straight home but came straight to the hospital because we were having her that night. The doctor held off long enough for Chad to get there. The nurses prepped me for my c-section and Chad started making phone calls. His sister and her husband came up with their digital camera for us (as we were not prepared to have her that day) so that we could get pictures of her right away. Just before I went up to the OR more family got there. As I was being wheeled to the elevator I passed what seem to be like 15 family members. At 8:07pm Chloe Ann came into the world crying little whimpers (which we were told she wouldn't be able to do) and weighing 2 lbs. 15 oz. and 13 in. long. We decided before we went in to have her to put her on a ventilator so we could have some time with her and say our hellos and goodbyes. Chad and I took turns holding her and at 12:30am on Oct. 23 we decided it was time to let her go. The doctor and nurses kept her on air til we got back to my room so we could spend our last moments with her alone. At 1am she passed away peacefully with a smile on her face in my arms. The only ones in the room was me, Chad, Chad's sister Diane, and our sister in law Amy. I am thankful that I had them in the room because we got pictures that we would have never gotten if they weren't there. I sent my sister in laws away about 2am so that we could be alone with Chloe and get some sleep. I kept her with me all that night and slept next to my sweet little girl and wished I could have kept her with me always and sleep next to her always. I had my children brought up to the hospital the next day on the 23rd so that they could see and hold their sister. They arrived around 2:30pm and left around 4pm and that is when we called the nurses to come get Chloe and call the funeral home. I was discharged the next day and instantly began to make funeral arrangements. Leaving that day without my daughter and seeing other mothers leaving with carseats killed me more and more inside. I couldn't quite comprehend why I left with just a box of momentos of my daughter and everyone else was leaving with their babies. Don't get me wrong I was totally happy for them because they are blessed to have their children with them. I cried all the way home and tried to think of everything that needed to be done. I decided to have an open casket for my daughter at the prayer service and the funeral not just so that everyone could see that my baby girl looked just as beautiful as any other baby but also for myself. The more I got to see my sweet angel and touch her hands and kiss her sweet forehead was a moment I got to love her just a little bit more. The funeral director was so caring and allowed me to hold her whenever I wanted and it was I that tucked her in for the last time. I cherish every moment that I got with her in life and in death but I know my pain will always be there. I was blessed to find the foundation Now I lay me down to sleep just in time. I am still currently waiting for the photos but when they get here it will be nice to see them.


Amy Jo said...

Thank you for sharing your story. Ours are so similar. I am so thankful you had time to spend with Chloe. She is beautiful!

Danielle said...

My son Wyatt was diagnosed with thanatophoric dysplasia at my 18 week ultrasound. We decided to continue the pregnancy regardless, and I have made it to 31 weeks pregnant so far. I just had an ultrasound and they said my amniotic fluid is starting to get on the higher end of the normal range... We hope to God we get time with our son like you did with Chloe. She was absolutely beautiful! I will keep your new pregnancy in my prayers. Thank you for sharing your story.

Lena said...

I am 27 weeks pregnanct and our little boy has the same diagnosis. Thank you for sharing your story and many, many lucks with your new pregnancy.