It's not about what God has done to me, but what he has done for Adam...

Thursday, July 9, 2009

From the beginning

With so much happening lately, it has become quite exhausting to call or email everyone with updates so I have decided to start a blog that will allow everyone easy access to the latest on whats happening with my pregnancy with Kylie.

I will start from the beginning to give some background. Steve and I had been trying to get pregnant again since Sept 08, we had no luck getting a baby to stick. Finally after 2 mc's (one being very early) and a d&c, 2 months to let my body recuperate and 1 month w/o luck, I found out I was pregnant again on March 23rd. My Dr knew how nervous I was and allowed me to come in very early for blood tests and as soon as those came back high enough, we scheduled an ultrasound. During the ultrasound we had quite a surprise, there were 2 babies with 2 heartbeats growing in there!! I was so shocked and overwhelmed but it only took a couple days for me to start to become very excited to have 2 new babies! A week later after some concerning symptoms I had another ultrasound that showed that 1 of the babies had stopped developing. I was upset and disappointed but was able to move on knowing that I still had one baby that seemed to be doing great!

We ended up getting 3 more ultrasounds that showed that everything was fine with this baby. I started to relax and feel more comfortable with this pregnancy. On June 12th we went to Sneak Preview 4d and were told that we were having a baby girl. We had already had the name picked out and from then on, our baby was called Kylie Anne.

2 weeks later I went in for a routine appt and had a follow-up ultrasound that did not come out like I had planned. Although after I lost the twin, I kept having this feeling that something was wrong with the baby, I brushed it off because all the US's were showing that everything was fine. It really caught me off guard when my Dr said that he would be referring me to a Maternal Fetal Medicine Dr for further work-up. The ultrasound that they had done that day showed that Kylie's aorta was too small, her bladder was not emptying, she had cysts on her kidneys and she had only had 1 artery in her umbilical cord instead of the 2 that she should have.

We went to the MFM (Maternal Fetal Medicine) Dr and they confirmed what we had already been told. They also said that the whole left side of her heart is to small. The Dr I saw that day did not think that anything could be done to help Kylie. She mentioned terminating the pregnancy because of the severe birth defects that she will have. I could not even consider this. God has allowed me to get pregnant with this baby for a reason. If she is meant to die, then it will be on his watch, not mine!

Later on that night after my appt , the Dr called me at 6:30pm to tell me that my trisomy 18 results were elevated. I thought she said that I had a 1.3% chance of Kylie having this. (Later on I learn that's its more like 1 in 3, much higher of a percentage). Trisomy 18 is a chromosomal abnormality that Dr's say is not compatible with life. 90% of babies with this are still born. These that are born, 90% die within the 1st month, then 90% die within the 2nd month and so on. While there is a very small chance that if she does have this, she could live for a short amount of time, she has heart and kidney problems that need surgery if she had any chance of living. Dr's will not do any type of surgery on trisomy 18 babies because they assume that they are going to die anyway.

I decided that Kylie did not have this and worked on finding a Dr who would drain her bladder so that her kidneys could stay functional and her lungs could develop. ( Lungs cannot develop if there isn't enough amniotic fluid and all of her amniotic fluid is in her bladder since she swallows it and then can't urinate it back out). I found a Dr in Miami that is an expert on this type of thing. Steve and I worked on making phone calls to make this happen. Finally on Monday July 5th, the office called and said that he reviewed the case and believes that he can help Kylie, but he wants me to have an amniocentesis first to rule out trisomy 18.

Yesterday, I had my amnio and am taking it easy for a couple days because it can cause your water to break, preterm labor, miscarriage, or infection. During the appt with the Dr yesterday, he was so thorough and very knowledgeable and gave me hope, until he said that he does believe she has trisomy 18. If she does not then he knows that the best Pediatric cardiologist is in St.Petersburg and will refer us to him for further evaluation of her heart because he is very concerned about it. The whole left ventricle (bottom left side of the heart) does not have any blood pumping through it. While he never gave us an official diagnosis, he mentioned that she probably has hypoplastic left heart syndrome. This is treated with a series of open heart surgeries or a heart transplant if severe enough. He also said that he does not believe that she has cysts on her kidneys, but that there are pockets of urine that is backing up that can be confused as cysts. Her right kidney does not look very good but he said the left looks normal. I was so relieved to hear this! You can live with only 1 kidney, but she would need a transplant if they both failed!

That is about it for now. We are just waiting on results of the amnio. Preliminary results should be back Monday or Tuesday. If it is positive for Trisomy 18 then we will just wait for God to take her from us and enjoy all the time we have with her. But if she does not have that, then we can start making further arrangements to get her fixed either inutero or after she is born.

Please continue to pray for Kylie and my family, this whole ordeal has been very hard on all of us and all of your support has really helped us get this far!


hollieaz said...

Thank you for sharing this story with all of us! I know it's been hard for you not knowing what is going on and what the results could say. I am so happy that you have clearly done your research and are fighting for Kylie!! You are a very strong woman! I love you so much and am here for you every step of the way!

Hope's Blog said...


Your story sounds so very familiar to me...although my little girl only has one kidney. I am happy to hear the FISH results came back normal! I am also so happy you have found help and I will pray for you, Kylie, and your family while you are in Florida.