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

Thursday, August 20, 2009

Another weekly appt....

Went to my weekly appt at the MFM Dr yesterday. It was pretty uneventful, which is actually how I like it anymore. During the ultrasound, we saw that the shunt is still in place. Thank you, God! Adam is now measuring 1 lb 11 oz!! He has grown 6 oz in a week, so next week, he should probably be over 2 lbs. Me , on the other hand have lost 2 lbs. I have been pretty sick since Monday night with a stomach bug and have been losing lots of fluid and haven't been able to successfully replace them. My amniotic fluid is down to a 10 instead of 12, but the Dr thinks its just because I have been dehydrated so I am trying my best to push fluids.

During the ultrasound, the tech said that Adam is practicing his breathing!! Babies usually start to do this around this time and I think its a good sign that hopefully his lungs were able to develop during the critical time when my amniotic fluid was low. If his practicing doesn't mean this, then I am sticking to it being a good thing and thinking that "ignorance is bliss" because I need something good to hold on to these last few months of pregnancy!

That's pretty much all for now. Go back again next week. Hopefully the Dr will have received the Echo report from Miami. He said that if he's not satisfied with the results then he'll schedule an appt with a cardiologist in St.Petersburg, which is what I want no matter what the results say. Doesn't hurt to get a second opinion!

Thursday, August 13, 2009

More of the same good news!

Had an appt with the Maternal Family Medicine Dr in Cape Coral yesterday. It actually went pretty well. It is the first time I have left that office not hysterically crying. The ultrasound tech was very nice and knowledgeable. She used to work for the specialist in Miami that we have been seeing, so she really knew what she was looking for. She found the shunt in the very tiny bladder right where it should be. She also was able to get good look between the legs and showed us his "boy parts", very exciting since we have not been able to see any proof that he is a boy, besides the amnio, since all the ultrasounds were saying "girl". We also found out that Adam weighs about 1 lb 5 oz! Yay, he is growing right where he should be instead of a week behind like he had been!

The Dr came in and he really is always such a downer. He didn't say anything that I didn't already know, but he has a way about him that puts a spin on the information to make it seem a lot more negative than it is. I guess Steve and I are pretty informed about whats going on and do our research, so we know how bad things can get. With this information we have chosen to be positive about it. Maybe some of the other patients don't really know what to expect so he is used to spelling things out and making sure they realize how severe the situation is. I didn't let his negativity get in the way of my happiness.

I told the Dr that I wanted a second opinion about the heart since everyone has been so sure that there is something very wrong with it. He said that he would rather just watch it for about another month and see how it looks because it looked more normal during this ultrasound than it ever has. He thought maybe the big bladder was pushing on the heart causing it too be distorted in the ultrasounds. I guess that could happen, or maybe God is answering our prayers. = )

I am just so over these dr appts and dr's! Our Dr said that he has his "suspicions" about this baby and his "suspicions" are usually not wrong. Whatever. Let's see, he was the one that was pretty confident that Adam had trisomy 18. WRONG! He was pretty confident that Adam had Hypoplastic Left Heart Syndrome. WRONG AGAIN. So, I am taking these "suspicions" with a grain of salt. I have a good feeling about my baby and am not going to let him bring me down anymore. He is not in control, but God is!

Anyway, we also decided that I am most likely going to be giving birth in St.Petersburg so that Adam can go to the NICU there where they have dr's that will be able to fix his urinary blockage, give him dialysis if needed and they also have invasive cardiology if needed. I will give birth in one hospital and then they will take him to the hospital next store. Wish I could be in the same building, but at least I will be in the same city.

On another note, I will be 24 weeks tmrw!! This is when Dr's consider a baby to be "viable". As much as I hate this concept, it's good to know that if I went into labor , then they would attempt to save him! This also marks the point when it is illegal to terminate a pregnancy, so the dr's can stop bringing this up as an option for me after I have told them "NO" repeatedly!

Next appt will be next Wednesday. Will update again then unless something happens between now and then. Please keep us in your prayers and we can keep proving these pessimistic dr's wrong!

Monday, August 10, 2009

Wonderful Appt today!!

Today was my first appt with the Dr since having surgery last Tuesday. We had an ultrasound and the shunt is still in place in the bladder!! The amniotic fluid is also much better than it had been. During the surgery the Dr had to add some fluid and he said that the fluid that I had today was not the fluid he added during surgery. If at least 1 of the kidneys weren't working, then the fluid would have been very low again! So that means, that as of right now, there is at least 1 kidney still working!!

The dr said that everything looks good right now, but "we haven't won the battle yet". The shunt could fall out, Adam could pull it out, there still might be severe kidney damage. But right now there is enough fluid to develop the lungs, which is the most important thing! He also said that he would like me to stay pregnant for at least 10 more weeks! Well, since I am only 23 weeks right now, I would hope I would be pregnant for like 16-17 more weeks at least. I guess with having the surgery it puts me at risk for preterm labor, so I probably won't be having a December baby, but possible a November or even October. He also said that the babies that have surgery on their bladders tend to be much larger than "normal" babies. Which is good, because if I do have Adam early then he will still be big enough to have surgery to fix the blockage in his bladder!

We also asked about the echocardiogram that we had done a couple weeks ago. He didn't go into details but said that the cardiologist said that it was "within normal limits". This is such good news, but I am going to be very cautious about believing it. I don't know anything about the cardiologist that read the echo. I will definitely get a 2nd opinion just to be sure. I don't want something to go wrong when Adam is born because of something that this cardiologist may have missed.

Right now, I don't have to make any more trips to Miami, I will just be seeing the Maternal Fetal Medicine Dr here and then eventually (hopefully sooner than later) going to have consults with another cardiologist and urologist (probably both in St.Petersburg) so we know what to be prepared for when Adam is born.

Tuesday, August 4, 2009

SO happy that today is over with!

Today was the big surgery day. The day started out early, got up at 3:55am so that I could be showered and ready to be in the pre-op area by 6am. We got out of the hotel in time and made it to the hospital by 5:30am. Once we made it to admitting, we were told that they weren't in yet, but could stay in the waiting room until 6 when the woman would arrive to admit us. I was a little annoyed because I was supposed to be in the pre-op area at 6 and how could I be there if I was in admitting at 6??
Anyway, made it to pre-op about 6:15, got changed into a gown and the nurse put an IV in. This was the worst IV experience I have ever had. The lady put an 18 gauge into a vein that I didn't even think would hold a 20! It throbbed for about 3 hrs then started to feel better and I figured that having a painful IV was probably the least of my worries. At about 8 the nurse let me know that I was going to be the 2nd case for the Dr instead of the 1st so it might be awhile. Finally at about 1130 the Dr came in and everything was set for me to head into the OR.
The OR experience was awful! I knew I was going to be mostly awake for the procedure, but since they were giving me fentanyl and diprivan I thought I would at least be "out of it". No such luck, I was WIDE awake the entire time. The only thing that saved my from the pain was the lidocaine that the Dr injected into me stomach before making the incision. I think he must have injected it deep enough so that I didn't feel everything that he was doing, but I certainly felt enough to know that it hurt! They also put a drape covering my head so that I didn't see what they were doing, but the drape was so close to my face, I really made me feel claustrophobic!
Adam decided that he was not going to turn from his awful breech, right side up position, so the first thing the Dr had to do was try to manually turn him. This wasn't too bad, mostly just a lot of pressure. Then he made the incision into me abdomen and from here I don't really know too many details of what he did because there was a big drape in front of my face! I do know that he was able to successfully place a shunt into the bladder. After he did that I started having contractions and they had to give me terbutiline to stop them. During the contractions, the cord was getting compressed and Adam's heart rate was dropping dramatically. In order to stop the cord compression the Dr added some amniotic fluid and then turned me on my side. Not real sure what else he had to do to get the heart rate back up, but I felt him pushing a lot on my stomach and then after surgery he said that they had to "resuscitate" Adam. I was pretty scared for awhile thinking that I was losing my little boy, but his heart rate came back up and then they sent me to recovery.
It took a couple hours after the surgery for me to feel any movement and I was getting worried but then Adam decided to kick and let me know he was still there. I was told that I was going to have to stay the night in the hospital to monitor contractions, but instead was discharged because I am only 22 weeks 4 days and they don't consider a baby to be viable until 24 weeks so even if I went into labor, they would not be able to help him at all. That really upsets me because although I know they couldn't revive him, I would at least think that if the contractions started again they could stop them and keep him in a little longer.
I go back to Miami next week to check on the shunt, the fluid and most importantly my baby and am praying that everything looks good so I don't have to go through this again!

Monday, August 3, 2009

Surgery in the AM!!

Surgery is scheduled for tmrw!! Had an ultrasound today and the bladder looked to be full again, so there is a chance that there is at least one kidney working! The Dr is going to try to place a shunt in Adam's bladder and right kidney. About 50% of the time the shunts come out of the bladder and then the procedure has to be repeated. The Dr thinks that it is the right kidney that is functioning, surprisingly, this is the kidney that "burst" last week. With putting the shunt in the kidney, if the Dr has chosen the kidney that is functioning, there is less of a chance of that coming out and having to go through all of this again. If the Dr has chosen the kidney that is not functioning and the bladder shunt comes out, then we will have to have the surgery repeated.
Over the weekend, I was sure that I had no amniotic fluid left because I was hardly feeling any movement. While the fluid is still low, its not much lower than it was last Monday. This is such good news because that means that his lungs have still been able to develop over the past week.
Last week, Adam was in such a perfect position for surgery because he was head down and his left side was up. The Dr liked when he was like this because Adam is missing the left umbilical artery and if he can go into the bladder from the left side, then it really decreased the chances of hitting the artery and killing my baby! Well, sometime since last Wednesday, Adam decided to do a flip and is now breech with his right side up!! The ultrasound tech was pretty amazed that he was able to completely turn around with such little room due to the low amniotic fluid. Its just another hurdle that we're going to have to jump to have a successful surgery. Going to be spending the evening praying and trying to talk Adam into turning around. If by morning, he has not turned yet, then the Dr will try to manually turn him during the surgery.
We didn't mention anything about the complete echocardiogram results today because we didn't want to remind the Dr that there is something else wrong with our little boy and have him change his mind about the surgery.
Have to be at the hospital VERY early, will have Steve update tmrw after surgery! Please send all your prayers this way!!