We went to our appt in St.Pete yesterday, fully expecting to be kept for observation like my OB had suggested, but the appt went in a whole new direction. The dr there does not think Adam has a very good prognosis. He said that there is a very high risk of cord compression, which would lead to a still birth. To be sure this doesn't happen, he was willing to do a csection today, but said that he would have practically no chance to survive if he was born now. He believes that it would be best to wait to as close to 37 weeks as possible in order for Adam to be big enough to survive the surgeries that he needs. But he doesn't think even at 37 weeks, that he has much of a chance to live anyway. We scheduled a c section for Nov. 12, I will be 36 weeks 6 days. 37 weeks was on Friday the 13th, and I am not superstitious, but I don't need anything else not being in our favor.
Steve called the MFM here today to see if they could possibly keep me in the hospital for observation until 37 weeks or at least until delivery became absolutely necessary, but the Dr said that he doesn't feel that its necessary. All of the Dr's agree that Adam will probably be stillborn, but none of them are willing to do anything about it!! I have tried but it is out of my hands now.
Every minute of the day that I am not feeling Adam move, my mind is wondering if maybe he compressed his cord and died. Mentally, the only way I am going to survive this, is by giving it to God and knowing that it is in his hands. I don't like feeling helpless, but I don't know what else to do. It is going to be a very long 6 weeks. The only thing that is keeping me going is knowing that Allison needs me. I almost believe her when she sees me crying and comes over and hugs me and tells me, "don't cry, mommy, its gonna be o-tay"...
Wednesday, September 30, 2009
Monday, September 28, 2009
Overnight Hospital Stay
Sunday morning I work up and had awful cramps. I just kept hoping they would get better and trying to do things to make them go away, but after 6 hrs they still persisted. I wanted to wait it out a little longer but Steve insisted that I go to the hospital to get checked. At the hospital I was hooked up to the machines to see if I was contracting, and at first I was not. But Adam's heart rate was not going up and down like they wanted it to. So I was sent to have an ultrasound. During the ultrasound, they did a biophysical profile, it's just a score they give babies to judge how good they are handling things. Adam's score was only 4/8 because his fluid was so low and he was not practicing his breathing. They also ran a test to see if I was likely to go into labor within the next 2 weeks. (The Ffn test)
We got back from ultrasound and the nurse was kind of panicked at the biophysical profile score and decided to hook me back up to the monitor. It was already decided that I would be staying the night for observation anyway. The Ffn test came back negative, so I was at lower risk of going into labor on my own. Then I started having lots of contractions. They weren't all that painful just really uncomfortable. The nurse told me that she had spoke with the dr on call and they were going to have the MFM dr on call talk and decide if they needed to deliver now. They even called the NICU to let them know that we might be delivering a premature baby with special needs. I started to get really nervous. Not only was I not ready to have Adam yet but I wasn't in St.Petersberg where I needed to be and I did not want him transferred up there while I was still there.
Finally they contractions stopped and Adam's heart rate started to look better, going up and down like they liked it. The OB on call came into my room and and did an ultrasound of her own. She was able to see Adam breathing and got an amniotic fluid index score of 2.2. Much better than the ultrasound tech had gotten. So were were safe for the time being! I was hooked up to the monitor all night and everything seemed to be fine.
I had an ultrasound this AM and Adam was practicing breathing again but his fluid was already down to 0.79. My OB and the MFM dr that had been following me came in and decided to send me home on bedrest. I have an appt tmrw in St.Pete to see the MFM there for their opinion. My Ob advised me to pack a suitcase because they might want to keep me for the duration of the pregnancy and even said that if this wasn't mentioned then I should bring it up myself.
Sorry if this post isn't very easy to follow but it is very hard to think these days. Leaving Allison last night was awful and I am not looking forward to being away from her for longer periods of time. If I talk to anyone and seem a little short or impatient, please don't take it personal. All of this is really starting to take a toll on me mentally and I really am doing the best I can to handle everything that has been thrown at me. Please continue to keep us in your prayers!!
We got back from ultrasound and the nurse was kind of panicked at the biophysical profile score and decided to hook me back up to the monitor. It was already decided that I would be staying the night for observation anyway. The Ffn test came back negative, so I was at lower risk of going into labor on my own. Then I started having lots of contractions. They weren't all that painful just really uncomfortable. The nurse told me that she had spoke with the dr on call and they were going to have the MFM dr on call talk and decide if they needed to deliver now. They even called the NICU to let them know that we might be delivering a premature baby with special needs. I started to get really nervous. Not only was I not ready to have Adam yet but I wasn't in St.Petersberg where I needed to be and I did not want him transferred up there while I was still there.
Finally they contractions stopped and Adam's heart rate started to look better, going up and down like they liked it. The OB on call came into my room and and did an ultrasound of her own. She was able to see Adam breathing and got an amniotic fluid index score of 2.2. Much better than the ultrasound tech had gotten. So were were safe for the time being! I was hooked up to the monitor all night and everything seemed to be fine.
I had an ultrasound this AM and Adam was practicing breathing again but his fluid was already down to 0.79. My OB and the MFM dr that had been following me came in and decided to send me home on bedrest. I have an appt tmrw in St.Pete to see the MFM there for their opinion. My Ob advised me to pack a suitcase because they might want to keep me for the duration of the pregnancy and even said that if this wasn't mentioned then I should bring it up myself.
Sorry if this post isn't very easy to follow but it is very hard to think these days. Leaving Allison last night was awful and I am not looking forward to being away from her for longer periods of time. If I talk to anyone and seem a little short or impatient, please don't take it personal. All of this is really starting to take a toll on me mentally and I really am doing the best I can to handle everything that has been thrown at me. Please continue to keep us in your prayers!!
Wednesday, September 23, 2009
Things are starting to move along
On Monday we went for our first non-stress test appt with the OB. Adam seemed to do pretty well once the Dr woke him up. His heart rate was going up and down just like it is supposed to and I only had on very tiny contraction. My OB said that if he didn't know that I had low amniotic fluid that he would not be able to tell from the results of the test.
Tuesday I had to go have the 3 hr glucose tolerance test done. This was awful!! I couldn't eat or drink 12 hrs prior to the test. Usually at night I get up about every hour and get a drink so I didn't get much sleep the night before the test because I kept having to convince myself to go back to sleep thirsty. I had to drink another orange drink, didn't taste so bad because I was SO thirsty but it made me feel really bad afterwards. I was dizzy, nauseous and really felt like I was going to pass out. It took a lot of will power to keep it down but I knew if it came back up then I would just have to do it all over again. AND I ended up having blood taken 5 times in 3 1/2 hrs, I felt like a human pin cushion.
Turns out I failed the test and now have been diagnosed with Gestational Diabetes. It is really beyond me how this happened to me. I will talk to my OB about it next week for likely causes because I just don't feel like I fit the risk factors. I have to go Monday morning and take a 3 hr Diabetes Class. Bet its going to be fun and now I have to poke my finger 4 times a day to check my blood sugar.
Today I went to the MFM dr for my weekly ultrasound. Didn't go so well. My fluid is down to 3.1, so it dropped 1.2 in 6 days. Its still going down at about the same rate as it has been. The ultrasound tech was not able to get Adam to move for her at all during the scan. Usually even if he was sleeping, he wakes up as soon as they start the ultrasound because he hates it, but all the poking and prodding of my belly wouldn't make him move. The tech kept watching different things during the ultrasound so that she could give him a good biophysical profile score. This is a score they give babies to show how they are handling life inside the womb. I don't know the exact score but I know he didn't do well because the Dr had a much different attitude about him than he did last week.
He first started out pretty much by lecturing me about having the diabetes and how I needed to change what and how much I eat. Well if anyone knows me, I have force fed myself to eat this pregnancy because I don't have much of an appetite. Lately I have been eating a lot of fatty/sugary foods to try and fatten Adam up. Looks like all it did was cause another problem for me. Then he goes on to talk about how the life expectancy of Americans is going down because of obesity and diabetes. Great way to talk to a worried, anxious pregnant mother that feels guilty for everything that is happening to her baby anyway... I guess he could have used a little more tact, knowing what I am going through.
Then we got to talking about Adam. He is not growing like he should, he has only gained 6 oz in the last 2 weeks and is now measuring 2 weeks behind. There are multiple reasons why his growth could be slowing and we're not sure the exact cause but no matter what I do, he's not going to be a big baby. He's obviously getting pretty concerned about the situation because his new goal is delivery between 34 and 35 weeks. This would be between Oct 23 and 30th. But he's not sure if we'll even be able to keep him in there for that long. I went today to get the 1st steroid shot that will help mature Adam's lungs and have to get the 2nd one tmrw. He called the MFM dr in St.Petersberg to get them to see me soon. So, as Adam's condition worsens, he seems to be proactive in taking care of the situation.
There were a few good things that came out of the appt today. Adam's chest cavity seems to be of normal size which leads the Dr to believe that his lungs have been able to develop. I was so relived to hear this because if his lungs were too small and underdeveloped, there's nothing any of the dr's could do to help him. He also said that when Adam is born, dialysis won't be urgently needed. When he is born his body will be free from toxins because the placenta has been doing this for him and it will probably take a week before dialysis is needed. This will allow time to stabilize him. He also said that there was not a size restriction on peritoneal dialysis. I had read before that babies had to be 8-9 lbs before dialysis would help, but he said that his size won't matter. This was such a relief.
I think that's about it for now, no more appts until Monday!!
FYI- I will be 30 weeks on Friday Sept 25th.
Tuesday I had to go have the 3 hr glucose tolerance test done. This was awful!! I couldn't eat or drink 12 hrs prior to the test. Usually at night I get up about every hour and get a drink so I didn't get much sleep the night before the test because I kept having to convince myself to go back to sleep thirsty. I had to drink another orange drink, didn't taste so bad because I was SO thirsty but it made me feel really bad afterwards. I was dizzy, nauseous and really felt like I was going to pass out. It took a lot of will power to keep it down but I knew if it came back up then I would just have to do it all over again. AND I ended up having blood taken 5 times in 3 1/2 hrs, I felt like a human pin cushion.
Turns out I failed the test and now have been diagnosed with Gestational Diabetes. It is really beyond me how this happened to me. I will talk to my OB about it next week for likely causes because I just don't feel like I fit the risk factors. I have to go Monday morning and take a 3 hr Diabetes Class. Bet its going to be fun and now I have to poke my finger 4 times a day to check my blood sugar.
Today I went to the MFM dr for my weekly ultrasound. Didn't go so well. My fluid is down to 3.1, so it dropped 1.2 in 6 days. Its still going down at about the same rate as it has been. The ultrasound tech was not able to get Adam to move for her at all during the scan. Usually even if he was sleeping, he wakes up as soon as they start the ultrasound because he hates it, but all the poking and prodding of my belly wouldn't make him move. The tech kept watching different things during the ultrasound so that she could give him a good biophysical profile score. This is a score they give babies to show how they are handling life inside the womb. I don't know the exact score but I know he didn't do well because the Dr had a much different attitude about him than he did last week.
He first started out pretty much by lecturing me about having the diabetes and how I needed to change what and how much I eat. Well if anyone knows me, I have force fed myself to eat this pregnancy because I don't have much of an appetite. Lately I have been eating a lot of fatty/sugary foods to try and fatten Adam up. Looks like all it did was cause another problem for me. Then he goes on to talk about how the life expectancy of Americans is going down because of obesity and diabetes. Great way to talk to a worried, anxious pregnant mother that feels guilty for everything that is happening to her baby anyway... I guess he could have used a little more tact, knowing what I am going through.
Then we got to talking about Adam. He is not growing like he should, he has only gained 6 oz in the last 2 weeks and is now measuring 2 weeks behind. There are multiple reasons why his growth could be slowing and we're not sure the exact cause but no matter what I do, he's not going to be a big baby. He's obviously getting pretty concerned about the situation because his new goal is delivery between 34 and 35 weeks. This would be between Oct 23 and 30th. But he's not sure if we'll even be able to keep him in there for that long. I went today to get the 1st steroid shot that will help mature Adam's lungs and have to get the 2nd one tmrw. He called the MFM dr in St.Petersberg to get them to see me soon. So, as Adam's condition worsens, he seems to be proactive in taking care of the situation.
There were a few good things that came out of the appt today. Adam's chest cavity seems to be of normal size which leads the Dr to believe that his lungs have been able to develop. I was so relived to hear this because if his lungs were too small and underdeveloped, there's nothing any of the dr's could do to help him. He also said that when Adam is born, dialysis won't be urgently needed. When he is born his body will be free from toxins because the placenta has been doing this for him and it will probably take a week before dialysis is needed. This will allow time to stabilize him. He also said that there was not a size restriction on peritoneal dialysis. I had read before that babies had to be 8-9 lbs before dialysis would help, but he said that his size won't matter. This was such a relief.
I think that's about it for now, no more appts until Monday!!
FYI- I will be 30 weeks on Friday Sept 25th.
Friday, September 18, 2009
Quick Update...I love my OB Dr!
Steve called this morning to try to set up an appt with my regular OB Dr to get his opinion on the situation. We didn't get an appt, but the Dr actually called and spoke with me himself. He seems to agree with us, that we can't just let Adam run out of fluid and die of cord compression. Right now, the fluid is low, but it is enough that we don't have to panic yet. He wants me to see him twice a week for non-stress tests. This is when they will hook me up to a monitor and watch for any contractions or any signs that Adam is in distress based on how his heart rate is going up and down. So, this is a start in the right direction and I will be reporting to him every week how the amniotic fluid is so that he will know when to intervene. I feel much better and can relax about the whole thing right now.
Thursday, September 17, 2009
Bad news, good news and more bad news...
Had my weekly MFM appt today. Didn't go very well at all. As expected, the fluid dropped another "1" on the amniotic fluid index scale making the fluid 4.3. If it continues to go at this rate, I will be out of fluid in about a month. I asked the Dr about our options when I fluid gets really low and pretty much he said we don't have any. He said that it would be too early to deliver, and he won't add fluid because it could cause pre-term labor. Well, I know Adam would be very small and have even more issues if he was born within the next month, but I would rather a small premature baby that has a chance at life than a baby that has died from cord compression due to low fluid. I don't even know what to do from here... Maybe I can go to St.Pete and try to get a second opinion. I feel like the Dr's have given up on my baby and I am helpless.
The good news that I got today, is that I should be covered by medicaid, hopefully starting in October. They will also go back and start paying past bills that I have been unable to pay. I just now have to hope that the specialists that Adam needs to see accept Medicaid. If not, then that will be another problem to deal with...
And for more bad news.... My OB office called and said that I failed the glucose tolerance test!! How did that happen?? I have only gained 6 lbs this whole pregnancy and am not even back to my pre-pregnancy weight!! Now I have to go on Monday and take the 3 hr long test. That should be lots of fun. I guess, in a sense it would be good for Adam because usually baby's whose mothers have Gestational Diabetes get really big. That would be a plus. I know there are other complications for the baby too, but maybe this would help plump him up for his upcoming surgeries.
Its been a rough day and I need to try to find the strength to get through these set backs.
The good news that I got today, is that I should be covered by medicaid, hopefully starting in October. They will also go back and start paying past bills that I have been unable to pay. I just now have to hope that the specialists that Adam needs to see accept Medicaid. If not, then that will be another problem to deal with...
And for more bad news.... My OB office called and said that I failed the glucose tolerance test!! How did that happen?? I have only gained 6 lbs this whole pregnancy and am not even back to my pre-pregnancy weight!! Now I have to go on Monday and take the 3 hr long test. That should be lots of fun. I guess, in a sense it would be good for Adam because usually baby's whose mothers have Gestational Diabetes get really big. That would be a plus. I know there are other complications for the baby too, but maybe this would help plump him up for his upcoming surgeries.
Its been a rough day and I need to try to find the strength to get through these set backs.
Tuesday, September 15, 2009
Pediatric Cardiologist Appt
Steve and I made the trip to St.Petersburg yesterday to see the Pediatric Cardiologist. Last week when we were at the MFM Dr appt he said that the heart looked really good, so I really wasn't expecting to hear anything but good news.
The news wasn't good but it definitely could have been worse. They found 2 problems during the echocardiogram. They believe that Adam has a bicuspid aortic valve. Basically, the aortic valve is one of the valves in the heart. Usually the valves have 3 "leaflets" but Adam only has 2. Sometimes people can go on to live normal lives until they are much older with this condition, Other times it needs to be treated early. There isn't a way for them to tell which category Adam will fall into until after he is born. The Cardiologist didn't seem to make a big deal of this finding, which was actually comforting because if it had been awful news, he would have gone over it in greater detail than just telling us about this so casually.
The other problem that they found was the aorta in Adam's heart seems to be to narrow. Until he is born, it cannot be accurately diagnosed but he is leading towards a condition called Coarctation of the Aorta. This condition will require surgery shortly after he is born. The Dr said that it is not open heart surgery, that they can just make several incisions in the chest and fix the aorta that way.
We have to follow up with the cardiologist in a month for another fetal echocardiogram. I really don't mind going to St.Pete to have these tests done. It is such a different place than Miami. It is cleaned and organized. I feel much better about having Adam there instead of Miami.
Had my regular OB appt today. It was pretty much uneventful. I had to drink the gross glucose drink to test for Gestational Diabetes. It took the Dr a couple minutes to find the heartbeat because Adam is so low compared to where babies usually are at this point. But once he found it, it was a good 135 beats per minute. My OB was concerned about the fluid. He said that usually when the fluid gets low, they will just induce or do a c-section to get the baby out to avoid any cord compression. I will take to the MFM Dr about this on Thursday, to see what his opinion is.
Please pray for kidney function and fluid! I have to keep Adam in as long as possible so that he will have a better chance of surviving the surgeries that he needs!
The news wasn't good but it definitely could have been worse. They found 2 problems during the echocardiogram. They believe that Adam has a bicuspid aortic valve. Basically, the aortic valve is one of the valves in the heart. Usually the valves have 3 "leaflets" but Adam only has 2. Sometimes people can go on to live normal lives until they are much older with this condition, Other times it needs to be treated early. There isn't a way for them to tell which category Adam will fall into until after he is born. The Cardiologist didn't seem to make a big deal of this finding, which was actually comforting because if it had been awful news, he would have gone over it in greater detail than just telling us about this so casually.
The other problem that they found was the aorta in Adam's heart seems to be to narrow. Until he is born, it cannot be accurately diagnosed but he is leading towards a condition called Coarctation of the Aorta. This condition will require surgery shortly after he is born. The Dr said that it is not open heart surgery, that they can just make several incisions in the chest and fix the aorta that way.
We have to follow up with the cardiologist in a month for another fetal echocardiogram. I really don't mind going to St.Pete to have these tests done. It is such a different place than Miami. It is cleaned and organized. I feel much better about having Adam there instead of Miami.
Had my regular OB appt today. It was pretty much uneventful. I had to drink the gross glucose drink to test for Gestational Diabetes. It took the Dr a couple minutes to find the heartbeat because Adam is so low compared to where babies usually are at this point. But once he found it, it was a good 135 beats per minute. My OB was concerned about the fluid. He said that usually when the fluid gets low, they will just induce or do a c-section to get the baby out to avoid any cord compression. I will take to the MFM Dr about this on Thursday, to see what his opinion is.
Please pray for kidney function and fluid! I have to keep Adam in as long as possible so that he will have a better chance of surviving the surgeries that he needs!
Sunday, September 13, 2009
Here we go again...
Today I am 28 weeks and 2 days pregnant. Finally in the 3rd trimester!
I had my dr's appt last Wednesday, I just have been having those days where I have felt defeated and close to wanting to give up. During my weekly ultrasound, the dr has determined that the amniotic fluid is low again. The last several weeks, all of the ultrasound techs have been saying that it has been getting lower, but the Dr would come in and find more fluid and say that its fine. I have been trusting him about this. Well, this week, he agreed with the techs and the fluid is about 5.5. It should be at least 9. Right after the surgery, it was up to 12. This could mean that Adam's kidneys are starting to shut down. I was so disappointed and upset, I didn't even want to ask any of the questions that I had planned on asking that appt. I just wanted to leave and go hide somewhere. Maybe this is all just a very bad dream and I'm going to wake up in a hospital someday coming out of a coma and none of this ever happened...
I am starting to adjust to this bad news. Its just scary because if the fluid disappears completely, then there is a high risk of cord compression which will cut off everything going to and from Adam and he could be still born if we don't catch it in time. I am not willing to let this happen. We have come too far to lose him from a cord accident. If I lose all amniotic fluid, then I am going to insist that they 1) put more in 2) deliver him early or 3)keep me in the hospital to continuously monitor his heart until he is ready to be born. Right now Adam is only about 2 lbs 4 oz. He is growing, but the growth seems to be slowing. I am not sure if this is because of his single umbilical artery or my lack of weight gain. I do plan on asking my OB this week if there is anything I can do to fatten up my little boy. If he is going to come early, then he needs to be as big as possible.
During the ultrasound, Adam is also still breech. With a normal pregnancy, there is still plenty of time for the baby to turn head down, but Adam is running out of room and the MFM Dr thinks I will have to have a csection. At this point, this is the last of my worries. I'm sure the recovery is awful, but honestly, I have an awful recovery after a vaginal delivery with Allison so I will be willing to do whatever is the safest for my baby boy.
I have lots of appts this week. On Monday we are going to St.Petersburg to see the cardiologist. On Tuesday, I have my regular OB appt that will include the glucose tolerance test and another fetal fibronectin test to make sure I'm not going to go into labor anytime soon. Then on Thursday, I have to go for my weekly appt with the MFM dr. Should be a very busy week.
Here is a bible verse Steve put on the background of our computer today that is starting to help me get my mindset back where it needs to be .
Jeremiah 29:11
For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.
I had my dr's appt last Wednesday, I just have been having those days where I have felt defeated and close to wanting to give up. During my weekly ultrasound, the dr has determined that the amniotic fluid is low again. The last several weeks, all of the ultrasound techs have been saying that it has been getting lower, but the Dr would come in and find more fluid and say that its fine. I have been trusting him about this. Well, this week, he agreed with the techs and the fluid is about 5.5. It should be at least 9. Right after the surgery, it was up to 12. This could mean that Adam's kidneys are starting to shut down. I was so disappointed and upset, I didn't even want to ask any of the questions that I had planned on asking that appt. I just wanted to leave and go hide somewhere. Maybe this is all just a very bad dream and I'm going to wake up in a hospital someday coming out of a coma and none of this ever happened...
I am starting to adjust to this bad news. Its just scary because if the fluid disappears completely, then there is a high risk of cord compression which will cut off everything going to and from Adam and he could be still born if we don't catch it in time. I am not willing to let this happen. We have come too far to lose him from a cord accident. If I lose all amniotic fluid, then I am going to insist that they 1) put more in 2) deliver him early or 3)keep me in the hospital to continuously monitor his heart until he is ready to be born. Right now Adam is only about 2 lbs 4 oz. He is growing, but the growth seems to be slowing. I am not sure if this is because of his single umbilical artery or my lack of weight gain. I do plan on asking my OB this week if there is anything I can do to fatten up my little boy. If he is going to come early, then he needs to be as big as possible.
During the ultrasound, Adam is also still breech. With a normal pregnancy, there is still plenty of time for the baby to turn head down, but Adam is running out of room and the MFM Dr thinks I will have to have a csection. At this point, this is the last of my worries. I'm sure the recovery is awful, but honestly, I have an awful recovery after a vaginal delivery with Allison so I will be willing to do whatever is the safest for my baby boy.
I have lots of appts this week. On Monday we are going to St.Petersburg to see the cardiologist. On Tuesday, I have my regular OB appt that will include the glucose tolerance test and another fetal fibronectin test to make sure I'm not going to go into labor anytime soon. Then on Thursday, I have to go for my weekly appt with the MFM dr. Should be a very busy week.
Here is a bible verse Steve put on the background of our computer today that is starting to help me get my mindset back where it needs to be .
Jeremiah 29:11
For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.
Sunday, September 6, 2009
This must be part of God's plan, right?
I want to start out by letting everyone know that this post is going to be a little different than the others. Usually I mostly give the facts with a few added emotions. This time, I will give a few facts and mostly emotions. I apologize if it doesn't make sense and kind of runs together, but there are a few thngs I want to share.
After my dr's appt on Wednesday, my OB had agreed to allow to me continue to work on "light duty". Unfortunately, there isn't anything at my job that I can do that would be considered to be
'light duty". I spoke with my supervisor Thursday and she informed me that I would just have to use my FMLA hours and then they would not be able to hold my position for me. I have about 9 weeks of FMLA hrs. During this time I will continue to be an employee of LMHS and still be able to receive benefits, including the very important health insurance. After this time, I will be "let go" from my position and will lose all benefits, including health insurance. Nice, huh? Lose health insurance right before I have a baby, a special needs baby at that. Ofocurse, there is always the option of paying for COBRA (this would allow me to pay a large amount of money to keep the same insurance for a specified amount of time) or being added to Steve's insurance. Either way, without my income, actually even if we did have my income, there is no way we could afford this!! So I applied for Medicaid.
Usually I don't like asking for help from anyone, not even the government. I want to do things on my own, financially. I hate when there are people I know that are just using the government to sit around on their butts and be lazy. I don't want to be clumped into this category. I know there are some people who really only survive from governement assistance and I believe that these are really the only people who should be getting any kind of financial help. But I don't even know if I will qualify for Medicaid or not. Right now, I am just praying that I do because I really don't know what I will do if I don't get it.
I really just don't know how a big company like Lee Memorial can allow this to happen to one of their employees? I have worked there for 4 1/2 yrs and because of a complicated pregnancy, they are not willing to allow me to remain an employee!! When I was pregnant with Allison and needed to go on lght duty, there was a wonderful program that allowed me to find a position where I could just sit down and work on the computer all day. This really saved my FMLA hours so that I would still have enough hrs to take off when she was born. And I was able to keep my health insurance. I just think that this hospital system is only out for themselves these days and really doesn't care about their employees or their patients for that matter. As long as they get their medicaid/ medicare reimbursment and the "big wigs" can sit in their big offices and comfy chairs, nobody else matters.
Why is all this happening? All I wanted was a baby, a brother or sister for Allison to share her life with. Now I have a sick little boy growing inside me, that may or may not even make it out of the hospital. Things aren't looking too bad right now. His heart is looking better. BUt we don't know if his lungs were able to develop when my amniotic fluid was low. If they didn't, there's nothing they can do for him. Even a ventilator won't be able to sustain his life. We don't know how his kidneys are going to turn out. There may be such little function that he won't live long enough or even be big enough for dialysis. He may be on dialysis for months or years. He might need a kidney transplant. There might even be problems that the ultrasounds haven't been able to pick up. There are so many things that we are not going to know about until he's born. But why is this happening? I have pretty much lost my job. Its going to take a miracle not to lose our house and our car. We could virtually lose everything and I might not even be able to bring a baby home from the hospital!
I am just trying to believe that all of this has to be part of God's plan for me and my family. Why else would all of this bad stuff be happening? I hope that there are better things in store for us. I hope that God will bless us for having faith in him, even during these bad times. I do need everyone's prayers so much right now. Unless Adam decides to make an early appearance, I will probably be induced the 2nd or 3rd week of November. That is just a long time to have to sit around the house and wait. Wait to celebrate my healthy son. Or wait to mourn the loss of my child. The reality of everything is starting to set in. I am not on bedrest, but can't really do too much. Just normal activities of daily living. My mind is my worst enemy right now. All I do is think. Think about Adam, being unemployed, uninsured , think about how I wish I could do more with Allison but physically and financially can't. Think about how I have just about nothing for Adam if he does come home from the hospital. No crib, no swing, no carseat because shopping for it just makes me cry thinking about how I might never get to use any of it.
I am just going to try to take things one day at a time
After my dr's appt on Wednesday, my OB had agreed to allow to me continue to work on "light duty". Unfortunately, there isn't anything at my job that I can do that would be considered to be
'light duty". I spoke with my supervisor Thursday and she informed me that I would just have to use my FMLA hours and then they would not be able to hold my position for me. I have about 9 weeks of FMLA hrs. During this time I will continue to be an employee of LMHS and still be able to receive benefits, including the very important health insurance. After this time, I will be "let go" from my position and will lose all benefits, including health insurance. Nice, huh? Lose health insurance right before I have a baby, a special needs baby at that. Ofocurse, there is always the option of paying for COBRA (this would allow me to pay a large amount of money to keep the same insurance for a specified amount of time) or being added to Steve's insurance. Either way, without my income, actually even if we did have my income, there is no way we could afford this!! So I applied for Medicaid.
Usually I don't like asking for help from anyone, not even the government. I want to do things on my own, financially. I hate when there are people I know that are just using the government to sit around on their butts and be lazy. I don't want to be clumped into this category. I know there are some people who really only survive from governement assistance and I believe that these are really the only people who should be getting any kind of financial help. But I don't even know if I will qualify for Medicaid or not. Right now, I am just praying that I do because I really don't know what I will do if I don't get it.
I really just don't know how a big company like Lee Memorial can allow this to happen to one of their employees? I have worked there for 4 1/2 yrs and because of a complicated pregnancy, they are not willing to allow me to remain an employee!! When I was pregnant with Allison and needed to go on lght duty, there was a wonderful program that allowed me to find a position where I could just sit down and work on the computer all day. This really saved my FMLA hours so that I would still have enough hrs to take off when she was born. And I was able to keep my health insurance. I just think that this hospital system is only out for themselves these days and really doesn't care about their employees or their patients for that matter. As long as they get their medicaid/ medicare reimbursment and the "big wigs" can sit in their big offices and comfy chairs, nobody else matters.
Why is all this happening? All I wanted was a baby, a brother or sister for Allison to share her life with. Now I have a sick little boy growing inside me, that may or may not even make it out of the hospital. Things aren't looking too bad right now. His heart is looking better. BUt we don't know if his lungs were able to develop when my amniotic fluid was low. If they didn't, there's nothing they can do for him. Even a ventilator won't be able to sustain his life. We don't know how his kidneys are going to turn out. There may be such little function that he won't live long enough or even be big enough for dialysis. He may be on dialysis for months or years. He might need a kidney transplant. There might even be problems that the ultrasounds haven't been able to pick up. There are so many things that we are not going to know about until he's born. But why is this happening? I have pretty much lost my job. Its going to take a miracle not to lose our house and our car. We could virtually lose everything and I might not even be able to bring a baby home from the hospital!
I am just trying to believe that all of this has to be part of God's plan for me and my family. Why else would all of this bad stuff be happening? I hope that there are better things in store for us. I hope that God will bless us for having faith in him, even during these bad times. I do need everyone's prayers so much right now. Unless Adam decides to make an early appearance, I will probably be induced the 2nd or 3rd week of November. That is just a long time to have to sit around the house and wait. Wait to celebrate my healthy son. Or wait to mourn the loss of my child. The reality of everything is starting to set in. I am not on bedrest, but can't really do too much. Just normal activities of daily living. My mind is my worst enemy right now. All I do is think. Think about Adam, being unemployed, uninsured , think about how I wish I could do more with Allison but physically and financially can't. Think about how I have just about nothing for Adam if he does come home from the hospital. No crib, no swing, no carseat because shopping for it just makes me cry thinking about how I might never get to use any of it.
I am just going to try to take things one day at a time
Wednesday, September 2, 2009
Had a couple scares...
I didn't write an update last week because not much changed. I did have a little scare. Adam decided to change positions on me. In doing that he was in a position that I was barely able to feel him move from Sunday afternoon until Wednesday. I felt a few slight movements and hiccups so knew he was alive, but convinced myself that the shunt had fallen out and he didn't have any fluid left and that's why I wasn't feeling him. But during the ultrasound I was assured that he was moving but his kicks were more towards my spine and diaphragm so I couldn't feel much. The shunt was in place and the fluid level was staying about the same. The MFM Dr received the Echo results from Miami and decided he still wanted a second opinion because of an inaccuracy in the report. He thinks that error was in transcription but to be sure we now have an appt in St.Petersburg on Sept 14th to see a pediatric cardiologist.
This week has been a little more eventful for me, and I like UNeventful weeks! During work on Monday I was cramping pretty bad and started spotting a little. I tried to ignore it and go about my day, but when I noticed the spotting a 2nd time, I decided I had to call the Dr. I didn't think it was anything to worry about but they insisted I come in. During the visit, the Dr checked my cervix and it was still closed and thick. Perfect! He also ran a test called fetal fibronectin or FFn. It is a swab that they take that will show if you are at increased risk to go into labor within the next 2 weeks. I was also put on a contraction monitor. It picked up 1 good contraction, but not enough to concern the Dr to do anymore testing. He sent me home on bed rest until Wednesday (today).
Ok, now for today's appts.. Went to the MFM medicine Dr today. There really isn't much to say about that appt. Fluid level is constant, heart is still somewhat asymmetrical, but doesn't look too bad. The Dr (the one I have referred to as being pessimistic) actually came out and said that he thinks the cardiologist is going to say that the heart looks good enough to be considered "normal". = ) Adam is still practicing his breathing and squirming all around. And this is the 2nd time that I have been told that he has HUGE feet. Right now, they are about 2 inches long! They didn't do any other measurements because I just had that done last week, but next week I should be able to give an update on his length and weight. I am 26 weeks 4 days today, an average baby weighs just over 2 lbs and the past 2 measurements he has been right around average.
Rushed from the MFM Dr appt to my regular OB appt. The Dr told me that the FFn test came back negative, so he is pretty confident that I should not go into labor within the next 2 weeks but he can't make a guess past that. He will repeat the test in 2 weeks. He also doesn't want me to work anymore. As nice as it sounds to not work, we cannot financially afford this! I told him that I would rather go on light duty. He ok'd this as long as no other complications arise. So hopefully my work will be able to find a "light duty" job that I can do so I can earn money for a little while longer until he decided that I HAVE to stop working completely.
This week has been a little more eventful for me, and I like UNeventful weeks! During work on Monday I was cramping pretty bad and started spotting a little. I tried to ignore it and go about my day, but when I noticed the spotting a 2nd time, I decided I had to call the Dr. I didn't think it was anything to worry about but they insisted I come in. During the visit, the Dr checked my cervix and it was still closed and thick. Perfect! He also ran a test called fetal fibronectin or FFn. It is a swab that they take that will show if you are at increased risk to go into labor within the next 2 weeks. I was also put on a contraction monitor. It picked up 1 good contraction, but not enough to concern the Dr to do anymore testing. He sent me home on bed rest until Wednesday (today).
Ok, now for today's appts.. Went to the MFM medicine Dr today. There really isn't much to say about that appt. Fluid level is constant, heart is still somewhat asymmetrical, but doesn't look too bad. The Dr (the one I have referred to as being pessimistic) actually came out and said that he thinks the cardiologist is going to say that the heart looks good enough to be considered "normal". = ) Adam is still practicing his breathing and squirming all around. And this is the 2nd time that I have been told that he has HUGE feet. Right now, they are about 2 inches long! They didn't do any other measurements because I just had that done last week, but next week I should be able to give an update on his length and weight. I am 26 weeks 4 days today, an average baby weighs just over 2 lbs and the past 2 measurements he has been right around average.
Rushed from the MFM Dr appt to my regular OB appt. The Dr told me that the FFn test came back negative, so he is pretty confident that I should not go into labor within the next 2 weeks but he can't make a guess past that. He will repeat the test in 2 weeks. He also doesn't want me to work anymore. As nice as it sounds to not work, we cannot financially afford this! I told him that I would rather go on light duty. He ok'd this as long as no other complications arise. So hopefully my work will be able to find a "light duty" job that I can do so I can earn money for a little while longer until he decided that I HAVE to stop working completely.
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!
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!
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.
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!
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!!
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!!
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!
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.
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!
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!
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