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

Wednesday, July 29, 2009

Surgery Mon or Tues!!

Didn't have the surgery today because the first set of urine results they took on Monday came back too high for surgery so they had to repeat the procedure today. The second sample also came back high but the Dr said we are still a candidate for surgery because he thinks that one of the kidneys has failed and is causing the results to be inaccurate. I will come back to Miami on Monday or Tuesday for the surgery! The Dr said that he can either place a shunt in the bladder or the kidney. The problem with placing a shunt in the kidney is that if he picks the bad kidney to shunt (since there's no way to tell which one is good and which one is bad w/o taking urine straight from the kidney) then we haven't helped Adam at all. From his experience he thinks the right kidney that ruptured is going to be the better of the two, but there is no guarantee. So we'll probably just shunt the bladder like previously planned and hope for the best.

Monday, July 27, 2009

Possible Surgery on Wednesday

Had another appt in Miami today, didn't go as well as I had hoped.
The good news is, the cardiologist looked at the echocardiogram of the heart and told the ultrasound tech that he does not consider it to be hypoplastic left heart syndrome! The ultrasound tech told us last week that she didn't think it was either, but it really helps that the cardiologist agrees. There still is a problem with the heart, but they don't think its so severe to label it "hypoplastic".
The bad news is that the kidneys have gotten worse and the amniotic fluid is very low. The right kidney "ruptured" because it was so full. This causes all of the urine in it to be released into the abdominal cavity. But the Dr said that after kidneys rupture, they regenerate and then are usually the better of the 2 kidneys. The left kidney looked fine last ultrasound but is now starting to fill with fluid.
The dr decided that it was time to intervene and do surgery, but first he needs to see there's still some kidney function. To do this, its like an amniocentesis procedure. They stick a needle in my abdomen, through the placenta to go through the baby's bladder and remove urine to be tested. They did this today and we will get the results back tmrw. If there is kidney function, then we will proceed with surgery on Wednesday to place a shunt to continually drain the bladder. If there isn't any kidney function then they will take another sample on Wednesday and if that comes back good then we will have surgery Friday or Monday. If there still isn't any kidney function then there isn't anymore that they can do for us because that means that the kidneys have stopped working completely.
Please continue to pray for my baby boy Adam!

Tuesday, July 21, 2009

The final amnio results are in...

I got the final amnio results today and there are NO chromosomal abnormalities!! But Kylie is a BOY and not a GIRL! We had an ultrasound at 15 weeks and we were told that it was 100% girl. It even looked like a girl to me, but its def. a boy. Nobody else has gotten a good look between the legs since then but the glimpses that everyone has seen, they have all agreed girl. So we're not real sure whats going on "down there".
I really shouldn't be surprised because until we had the ultrasound that told us "girl" I was positive it was a boy. I even told my mom that I didn't need an ultrasound to tell me because I was so sure. Well, looks like my motherly instincts were indeed right.
There could be problems with the genitals if they are not looking like they should but we won't know anything until another sonographer is able to get a good look. I am concerned about this but its not life threatening and its more important to focus on the heart and bladder right now.
The good news, I don't have to go back to the Maternal Fetal Medicine dr here anymore. He said that if they were going to follow me in Miami, then I could just go there for everything. I go back to Miami on Monday and they will take another look at the bladder and kidneys and I will have another fetal echo. I think he will probably also refer me to a pediatric cardiologist in Miami instead of going to St.Petersburg like we had originally planned, this way, everything is at least in 1 city.
Steve and I have to talk and decide what we want to name the baby now. Its probably either going to be Kyle Stephen or Adam Stephen, unless we throw a new name in the mix.

Thursday, July 16, 2009

NO Surgery, as of right now!

I am in Miami right now and have had a very long day at the hospital with the ultrasound and the consultation with the dr. We got pretty good news, the dr does not believe the Kylie needs surgery right now. Her bladder is still very full, but she still has enough amniotic fluid to develop her lungs. She has a lot of hydronephrosis (swelling) on her right kidney but the left one looks fine! He thinks that she has a partial urinary blockage that is not allowing her to completely empty her bladder, but since he could see it contracting, he does think that she is emptying it a little, which is allowing her to have some of her amniotic fluid. We are not out of the woods yet, he said that there is something wrong here, but he thinks it would be better to have weekly ultrasounds with him than to jump in and do surgery. I am so relieved to not have to go through the surgery right now. It might be something that I have to do in the future, but I can try to relax now.
The ultrasound tech also does not think her heart is as bad as we had once thought. The left side is definetly smaller, but she would not classify it as being "hypoplastic" yet. She talked to the Dr and wants an echo done with him during my next visit. So overall it was a good visit and I hope that we get better news with each appt!

Wednesday, July 15, 2009

Got the call!!!

After a big insurance mess, finally received the news that they have made an appt for me tmrw in Miami for a consultation with the Dr! Plan is that I will have the consultation tmrw, then surgery on Friday, spend 1 night in the hospital, 1 night in the hotel so that I am close by if there are any complications then head back home for some bedrest! The surgery that we are supposed to be having done, is the surgery to drain her bladder. So excited but scared and hate the idea of leaving Allison for that long! But it will all be worth it to save Kylie's life! Thanks for everyone's support! I will update when we get back.

Friday, July 10, 2009

Preliminary Amnio Results

The Dr's office just called and the preliminary amnio results came back normal! They are about 97% accurate. The final results will probably not come back until next week or the week after, but the specialist in Miami has enough faith in these results that he is willing to see us. Steve just talked to them and they said to be on stand-by to come down for a consultation, it probably won't be until Monday though. Hopefully after the consultation, he will be able to drain her bladder, helping her kidneys function, her lungs develop and help replenish the amniotic fluid! This is the best news we have received in a long time! Thanks for all the prayers and please continue to pray for us. We are going to have a long road ahead of us!

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!