February 23, 2009

Thank you so much to everyone for all of the prayers for Geneva Marie. They mean so much to all of us. I’m trying to keep a journal I pray she will one day be able to read and see how so many people prayed on her behalf. have more details about the ultrasound findings below and also have addressed some questions that have been asked by some people over the past few weeks.

Her head is looking better and her heart appears to be symmetrical. The nuchal fold is still slightly thick and there appears to be some swelling. This could possibly be due to the fact that she still might have a heart condition that requires surgery immediately after birth, it could mean nothing or it could be something more serious. However, her spine still appears to look great. Many times a “scallop” or “lemon shape” to the head is an indicator of neural/spinal problems. We still don't see any evidence of a cleft palate, club feet or clenched fists which are often associated with Trisomy babies. She has been dubbed "Drama Queen" at the office because she wouldn't hold still AGAIN and it appeared as though she kept touching her head and trying to grab her non-existent hair. : )

We have definitely decided against an amnio unless it is much later and we can be told some information that would help determine where we would deliver, in case she needed heart surgery right away. However, we should be able to tell that with a fetal echocardiogram. At this point an amnio would just be a peace of mind piece of information and there would be no benefit to her at all. There is about a 1 in 200 chance of infection and/or miscarriage. If I had one done now and had the membrane of amniotic fluid ruptured, she would not survive. So, to risk her life for our peace of mind just wasn’t worth it to us. Even though we’ve had some ask if we would find out to “terminate” the pregnancy, this would never be an option for us. Most people who know us know very clearly where we stand on that issue and I am extremely offended at that suggestion. I recall very distinctly driving in my car one day and hearing a young man give his testimony about how doctor after doctor shared with his parents that they should abort him because he had no brain and would only live a few minutes. This young man is now studying to be a neurosurgeon!

According to the lab, they have less than a 5% false positive rating. Essentially that means that odds are against her by a mile, but we are praying that she is one of those 5%. I still have to take the baby aspirin but I guess that is fairly common. I go to my regular OB on Monday and back for another level 2 and fetal echo in 4 weeks. The perinatologist said USUALLY babies with Trisomy 18 show some kind of physical deformity at this stage and she hasn't but that since we are foregoing the amnio, it is a wait and see game. From what I understood, sometime by week 28-32, growth would significantly slow down so a baby that is 32 weeks will measure around 27 weeks. Our babies have been in the 9 1/2 - 10 lb range except for one who was 8lbs 10 oz. Needless to say, my prayers for a normal sized baby have stopped pronto and now I'm happy to have a big baby. So for now, we are going to wait, pray and try to be patient. For those not familiar with Trisomy, it is my understanding that 2/3 of the babies aren’t born alive and for those who do survive birth, less than 10% make it to a year old. (I'm sure there are other statistics but this is what I recall.) Many people refer to this condition as “imcompatible with life” however that really isn’t an accurate term. There are so many different types of Trisomy and different degrees of it. Some children run and play and besides a slight speech impediment, you wouldn’t even know they had any type of medical condition. Some live into their 20’s and I believe the oldest known woman was just over 40 when she recently passed away. Most of the surviving children have speech delays and perhaps need assistance walking. Some participate in normal classrooms but some require special education classes. Each of our children are given a little nickname before they are born or before we know the gender, if we find out ahead of time. Interestingly enough, Geneva's nickname was Baby Who. We've always loved Horton Hears a Who, especially the line, "A person's a person, no matter how small." This seemed perfect for our pregnancy, especially now. The perinatologist's office stated they would no longer continue sonograms and follow up care if they found any disorder from the amniocentesis. Our new OB assured me he would give us the best care possible and that our little angel is a blessing for as long or as little as she lives.

Although it is my sincere desire that Geneva is born a healthy little lady, I also appreciate the fact that if she is not to survive, I have this time to prepare and think about preparations. I have made lists of burial information, checked into laws for burials, thought about her baptism should she survive long enough to have one, etc. These aren’t things I’ve been dwelling upon but simply trying to think about a little now so I wouldn’t have to make split decisions later. I would rather have researched information ahead of time if given the opportunity so my husband and I can discuss our wishes with plenty of time to think about it ahead of time. Everyone handles these types of situations differently and needs to decide what is best for them but these decisions are not up for criticism and something only a person faced with a similar situation might understand. I would never wish this upon anyone and certainly have a new understanding of the processes others face in these situations. I have heard and read about dear families that have had to make last minute decisions and have regrets and it has been overwhelming. Many people are thankful for advance notification their child might have a terminal illness.

I'm not on complete bedrest as of this moment but that could change when I go back for my apt on Monday afternoon. I was specifically told I had to hire out cleaning as I'm not to do any laundry, vacuuming, lifting heavy pans, etc and stay off my feet for too long. At first I thought it was a joke but they weren’t kidding. It looks like I've either had contractions or I might have a fibroid tumor as well. That could be a potentially large problem, but hopefully it will go away. : ) It's important that I not go into labor until as late as possible for many reasons. Most importantly, we need Geneva to be as mature as possible to help her health risks stay low, I have a tendency to bleed a lot anyway and the aspirin could increase that problem so I will probably have to stop taking it closer to delivery. I can't remember the other reasons because I'm so tired. .

Bed rest – I have had some insinuate that perhaps I shouldn’t be on bedrest because if there was something wrong with the baby then I should have a natural miscarriage. I actually appreciated more the person who actually asked me about why I was on bedrest so she could understand better than those that insinuated I shouldn't be trying to stop a miscarriage. : -) Again, this is a very personal decision and something each family has to decide for themselves. When we were expecting Weston, it was suggested I take progesterone cream as my levels dropped to 9 and you usually miscarry at 8. Ideal levels are around 15 and they don’t like you to be below 12. We decided not to take the cream as this sometimes prolongs inevitable miscarriages. Had he been our first pregnancy, we probably would have decided otherwise. However, knowing that we had 4 other pregnancies and none needed progesterone supplements, we know my body usually produced enough on it’s own. However, a friend of mine in college had several miscarriages before it was determined she needed progesterone supplements to have healthy babies. As of now, I was primarily put on bedrest not because of contractions but because of bleeding for other reasons. I had surgery about 1 ½ years ago and was told at the time that it would not be a problem for us to have more children after the surgery. I told my doctor if it was a problem then I would wait until after menopause because although we weren’t actively trying to get pregnant we knew it was a possibility. Most doctors look at my health history and are amazed that we have any children, much less seven. I have had endometriosis, PCOS and other conditions that would all make it difficult to conceive but we’ve been very blessed. We were assured there wasn’t a problem with the surgery. At the time, we were selling one house, buying our farm and living in an apartment closer to my husband’s new job. With all of the expenses, we cut out the internet for about 2 months and I did not research the surgery like I usually do. We planned on having surgery and it wasn’t until my pre-op visit, the day before surgery, that he recommended having the surgery with a mesh. I was told that if I didn’t have the mesh then I would likely have to have it redone in 5-10 years. Well, hubby and I knew that we didn’t want me to go in every so many years for surgery, so we opted to use the mesh. Normally I would have researched it but with no internet, the day before surgery, I didn’t and I SEVERELY regret that decision. I have not been completely comfortable since the surgery. When I did get pregnant and went to the doctor’s office, I was told, “Oh, you are my first patient to have the surgery and then get pregnant. I’ll have to do some more research.” !!! Needless to say, I was very upset. The time for research was ahead of time and now I was feeling like a guinea pig. I have since switched doctors and he never said anything bad about the first doctor but did tell me that some OB’s won’t even perform the surgery unless a woman has her tubes tied. When I told the perinatologist how uncomfortable this pregnancy has been he proceeded to tell me that it is much more uncomfortable for women and I can expect it to only get worse. So, as the baby grows it pulls on the mesh in my body and causes pain and could cause me to possibly bleed. This is mostly why I’m on bedrest and why we have to have a scheduled c-section. I really don’t know what kind of complications there could be from this and why this will have to be our last baby.

And, since I know it will come up in the minds of some, let me just say that the reason I had to have the surgery was not because of how many children we had, it was because I had complications after a pregnancy induction. That’s why I tell women to never have one of those unless it is life threatening. I’ve since learned sooooo much from my wonderful midwives in FL and learned how to prepare my body for labor and delivery, so much so that my first birth with them resulted in Virginia being born in the van. I was painting my nails and had a baby in my arms less than 45 minutes later. Although it wasn’t a part of any of my birth plans, it was the best and funniest labor and delivery I ever had. If any woman wants to know more information about that, I would be happy to share my notes. Now, the only problem with that is that I usually don’t know I’m in labor until I’m pretty close to pushing. With the last three births I’ve had a baby in my arms in less than 2 hours after I know it’s about time to head to the hospital/birth center. Since I have to have a c-section this time and the hospital is over an hour away, I need to be monitored more closely to make sure I’m not going into labor without being aware. My OB has assured me that I very likely will be able to tell this time as I will be much more uncomfortable because of my surgery. l tell you all of this not because I particularly get excitement out of sharing such personal information but because I wish I had known about the problems associated with this mesh surgery and if I can help even just one person then it is worth it to me. : -)

Thank you again so much for your prayers and continued prayers for both of us. We do have peace and comfort knowing the Lord has numbered our days before we were even formed and that His plans are always the best. We are so thankful for this precious gift and pray our lives will be honoring to Him.

Stephanie

Psalm 128:3

Fruitful Vine to Harry

Olive Plants around our table:

Dawn (21 yrs)

Jay (11yrs)

Avonlea (10 yrs)

Virginia (6 yrs)

Dabney (5 yrs)

Weston (4 yrs)

and Geneva Marie (due to debut this summer)

We are excited that Jay will be participating in the Regional Spelling Bee tomorrow! Avonlea came down with a fever so it looks like I will probably be staying home with some children but I’m sure he’ll do great and Daddy will get lots of video! : )