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

Wednesday, September 30, 2009

It's in God's hands now

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"...

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!!

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.

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.

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!

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.

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

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.