May 14, 2009

We've decided to have the delivery and surgery at Vanderbilt in Nashville, TN. Although we loved the doctors and staff in Philadelphia, the location was not a good fit. They told us that they thought Vanderbilt would be a fine place to have the surgery. In addition to all of that, once they found out I might have some health issues of my own, I was told they were equipped to only deliver healthy mothers and I would have to deliver at another hospital in the area and have you transferred to their hospital. I've never been separated from my babies except for one time when I took a shower and Jay went to the nursery for just a short period of time. This isn't going to be easy for either one of us, but the Lord will see us through.

The hospital is very nice and we really liked the staff. We have to be there by June 20th and your delivery is scheduled for July 6th, if you make it that far along. We were told you were in the perfect ICU right now. God created this womb for your protections and Daddy is trying to help me stay off my feet so you can stay in there as long as possible. Your father is such a hard worker so I'm trying to work hard at home and work at plans for your care and where we might be able to stay. We received a call yesterday with permission to have the fundraiser at a church in town to try and raise some money to pay for our expenses. We don't know how many surgeries you will need or how long we will be in the hospital but we've been given some estimates.

Prayers needed: We would like to see Geneva's mitral valve and aortic valve enlarge. The pulmonary valve looks good. Although Geneva is over the 90% for size, those valves are in the 5% or less category. We would also like to see a correction of the coarctation of her aortic arch and for there to be NO MORE PROBLEMS, including no genetic disorders. Thank you all for your prayers!

May 11, 2009

It looks like we have some other things to consider. My blood pressure is rising and platelet levels are dropping. We now have to consider a safe place for both of us when you are born. Mommy and Daddy are leaving to visit another hospital this week. Grandma Joann is coming to stay here on the farm and help with your siblings.

April 29, 2009

We have decided to visit two hospitals to consider for your care, CHOP in Philadelphia and Vanderbilt in Nashville. Our first appointment was made for Philly. Most of your brothers and sisters are with us and we are going to meet the doctors together. Mommy had to have an MRI and I wasn't sedated. I've never had one of those and since you are so big, I had to lie down in a funny way and stay still for a whole hour! Soon you will find that it's hard for me to hold still for 5 minutes, much less an hour. I used that time to pray for you and continued to ask the Lord to heal you. After our MRI, we went to have a sonogram and a fetal echocardiogram. The sonographers were so sweet and they were laughing because you kept moving so much and every time they tried to get a picture of your face, you would try and grab your feet. Your legs were over your head, along with an umbilical cord and one hand. We finally were able to see you and you are just beautiful. You are a Seabrook for sure with your little button nose and perfect rosebud lips. Every sonographer keeps commenting on how much hair you have! And you are already more than 4 lbs!! Way to go! If you continue at this rate, you might beat Daddy's record of 11lbs 4 oz!

April 22, 2009

Below is an email I sent to the Schoondyke family. Their little girl, Kari, just passed away 2 weeks before I wrote this. They were very gracious in their response. We found out that you and Kari have the same heart condition and Dr. Bremer was her doctor too. They told us you were in good hands with her care!

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Hello. I have never met your family but have been crying to the Lord and praying for you all since the beginning of April when I first heard of Kari’s struggles. She touched me so and I prayed for her so often and was terribly distraught at her passing. Since then I have prayed often for peace and comfort for your entire family.

Perhaps because of ignorance or perhaps because the Lord knew I needed some peace in this pregnancy, I never really thought our new little blessing, Geneva, would ever need heart surgery. Maybe I did know in the back of my mind that was a possibility and why I felt so connected to Kari. Although there has been concern that Geneva might have Trisomy 18 earlier on and her left ventricle was about 30%smaller at one time, I was naïve. She has shown no signs of Trisomy and her heart is now a normal size so I wanted to believe that she might just have an innocent heart murmur that would require no treatment and there would be no problems.. Even though we live in Lebanon,VA, we chose to travel a distance for her fetal echo as I wasn’t comfortable at all at the office I went to in Kingsport. I had an appointment yesterday with a wonderful pediatric cardiologist in Knoxville, Dr.Bremer. It was after that fetal echo that I was first told of Geneva’s heart condition and understood the gravity of the situation. She has VSD, aortic stenosis and an interrupted aortic arch. I am already 29 weeks along tomorrow and we are trying to decide where to have surgery, what questions to ask and where we will stay. We homeschool and I will likely have the children with me before delivery as we don’t have any family close by that could stay with them. We know after recovery, I will want to/need to be with our newborn and will have family members staying at that time with the children. I’ve been told there are sometimes furnished townhouses for rent for situations such as ours so we are going to try and decide by the end of next week to go to CHOP or Vanderbilt so we can begin preparations for a short term stay there.

I know Kari has just passed away recently and I hesitated to contact you but was encouraged by a few families on our homeschool list to do so. Please know that if this is too difficult for you then I’m so sorry and have no desire to add to your pain at all.

May the Lord continue to comfort your family during this time.

Thank you so much for any help you can give.

April 21, 2009

Through a very fortunate series of events, we were able to get in to see a wonderful pediatric cardiologist today, Dr. Bremer. I, Stephanie, went alone thinking (praying) there would be no problem and we would be told Geneva had an innocent murmur and it would be something she would outgrow quickly and she would be a healthy baby. I wasn't prepared for the news I received that day. Dr. Bremer said you have an interrupted aortic arch, VSD and aortic stenosis and Geneva will require heart surgery soon after birth. It was a long 3 hr drive home but I was thankful for the time to be alone and pray and cry without worrying about upsetting others. Most people find out about these situations when they are about 18 weeks pregnant but I am 29 weeks already. We have a lot of research to do and decisions to make. Geneva, your days have beeen numbered before we even knew of your existence. I wish I could take away the pain and suffering you are going to experience but I am going to do all I can to be right next to you and Daddy and Mommy will ask the Lord to please give the doctors wisdom and for you to be as comfortable as possible. We all love you so!!

April 13,2009

Hi. I was hoping to send an update with our baby’s heart but I fear I can not, as of yet. I was scheduled for a fetal echocardiogram today but when I wouldn’t give my husband’s social security number, I was refused treatment. I tried explaining that the insurance company doesn’t require nor do they even refer to social security numbers any more, I was told that was too bad but the company policy was that they had to have it for billing purposes. Once the EXTREMELY RUDE receptionist spoke with the insurance company (on my cell phone and per my pleasant request), she told them “I don’t care. I’m not going to deal with this any more.” Just prior to this I was told I had 10 minutes to decide if I was going to give my husband’s social security number or pay for the fetal echocardiogram (which you can imagine would be expensive) and get reimbursed from the insurance company what I could, which would be less than what the doctor’s office would get for their UCR. My co-pay was supposed to be $15 and the insurance company verified the office and doctor were in network and would be reimbursed but they didn’t care. I offered other forms of ID if that is what they wanted but they insisted on a social security number for billing. They even had mine on file because someone gave it to one office in a network years ago and it’s been in there ever since so they weren’t concerned about my identity. I asked if the doctor had other appointments and the reply was, “No, he has other things to do today.” Even though my apt was supposed to be from 11-12 I was told that I had to give them the number by 10:45 or could leave and not be seen. It’s one thing for me to be treated unkindly or rudely in a grocery store but it’s another when you are dealing with the sensitivity of a pediatric cardiologist’s office. Needless to say this has caused much stress as I need this information to know whether or not my baby might need heart surgery when she is born in order to survive. It could be that we would need to have a surgical team close by if needed for her to continue living.

If anyone has any advice (besides to give them a social security #), please email. I’m sure there are people without these numbers that still receive medical care. I have no desire for a lawsuit but I would like to receive the medical treatment I believe my daughter needs and they are contractually obligated to give us through the contract they have with our insurance company.

Most importantly, please continue to pray for our newest little blessing and family.

Many blessings,

Stephanie

Psalm 128:3

Fruitful Vine to Harry

Olive Plants around our table:

Dawn (21 yrs)

Jay (12yrs)

Avonlea (10 yrs)

Virginia (6 yrs)

Dabney (5 yrs)

Weston (4 yrs)

and Geneva Marie (due to debut this summer)

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! : )

February 13, 2009

Thank you for the prayers for our precious little girl, Geneva Marie. I just received a call from the perinatolgist's office and the news is not very encouraging. As of now, her risk for a genetic disorder is at least 1 in 2. They are recommending an amniocentisis so we will know if and what. My AFP results were the only good results which means the likelihood that it would be a neural tube defect are 1 in 62,000. However, the risk for Down's Syndrome and any of the Trisomy disorders is at least 1 in 2. Please pray for us for peace and wisdom and specifically for her health. Some of you may recall that Weston was given less than a 2% chance for survival much less a healthy baby so we have seen what can happen through prayer before. My desire as of now would be to have an amniocentis after 30 weeks but I just don't know what to do. Thank you so much for your prayers, love and support.

Love,
Steph

Just after sending this email, Mommy had some bleeding and we spent the night in the emergency room. The sonographer did a sonogram and found out the bleeding wasn't because YOU were having complications but Mommy's body was having some trouble since I was having complications from my mesh surgery. Daddy and Mommy celebrated the news and Valentine's Day morning by eating at the Waffle House around 5AM on Valentine's Day. We are so thankful you are alive and well.

February 6, 2009

We are so excited!! Today we are going to find out if you are a boy or a girl. You are the tie breaker you know. You have three older sisters and three older brothers. Dawn was in Switzerland for her job as au pair. Daddy and the rest of your siblings (Jay, Avonlea, Virginia, Dabney and Weston) were all there to see you and find out who you would be. We affectionately referred to you as Baby Who. One of our favorite books is Horton Hears a Who. We know babies are important no mater how small they are. Our favorite line from the book, "A person's a person, no matter how small."

After the sonogram, Mommy sent out the following email:

Hello. We had our sonogram and saw our beautiful baby girl!!! : ) I have to go back for another level 2 sonogram as there were a few issues of concern that we would ask you to join us in prayer about...

1. Left ventricle is visibly smaller than the others. We would like to see this a normal size. As of now, her heart in relation to her body is the right size but this one chamber is smaller than the rest. Even Avonlea asked as to why it was smaller. This is the biggest concern right now. If this were to not improve or get smaller, it could be an indication of a heart defect that would need to be corrected by surgery immediately after birth. The only sure way to know of that would be an amniocentesis which we are opposed to doing unless absolutely necessary and we would want to do it as late as possible. If she in fact needed surgery then we would need to deliver at the hospital several hours away. This is the worse case scenario but we are praying for the best case which is that it will clear up on it's one, which is a possibility. : )

2. Fold thickness - measuring a little thick right now.

3. Amniotic fluid - measuring borderline too much.

4. Head shape - although brain looks good, the shape is an odd shape from certain angles and is just going to be checked again in three weeks at next sonogram.

5. Blood flow to baby - I have to take a baby aspirin once a day to try and increase those vessels.

Again, we are praying all is well and these could all be nothing and we pray that will be the case. We LOVE the perinatologist and his entire office staff today was absolutely fabulous. The little children were all with us and asked tons of questions that were patiently answered. It was a very educational experience for all of us. The doctor told me that he has seen women who have had the same surgery as me before and there is much more discomfort in those pregnancies than others which explains a lot of what's going on with me.

Thanks so much for your prayers. And, a dear friend sent me the name of a chiropractor that I'm going to contact next week to see if I can get some relief.

Blessings,
Stephanie Seabrook

News of my arrival

November 1, 2008

Mommy is suspecting that there might be a new beautiful life inside her. We were out of town, visiting Grandma Joann and PaPa Ron when we decided to take a pregnancy test. It would be very early to find out but Mommy is so excited to tell Daddy once he's home from his meetings. Surprise! Mommy was right! You are coming. She writes a note to Daddy telling him how blessed she is to be his wife and the mother of his SEVEN children!! Will you be a boy or girl? We don't know but you are a tie breaker! :-) Thankfully Mommy started her vitamins weeks ago since she had a hunch that she might get pregnant soon.

My beginning

Psalm 139:15 - 17

My substance was not hid from thee, when I was made in secret, curiously wrought in the lowest parts of the earth.

Thine eyes did see my substance, yet being unperfect; and in thy book all my members were written, which in continuance were fashioned, when as yet there was none of them.

How precious also are thy thoughts unto me, O God! how great is the sum of them!

October 2008

My precious Geneva Marie, you are being formed in your secret place and only our Lord knows of your life.