What to Expect When You are Expecting A Baby with a Cystic Hygroma…

Please excuse my cheesy attempt for a blog title…Bennett and I watched What to  Expect When You are Expecting just a few days before we found out the news about our little one–and I can say that these past 11 weeks have been nothing like the movies! 🙂

Thursday cannot get here soon enough! I was doing pretty good these past few weeks staying busy and distracted, but last night sleep took awhile to come and all I could think about is what is going on with our precious baby. The statistics are daunting. 70% chance of losing this baby before first trimester, 40% after the first trimester, 85% chance of this baby being born with a disability and a mere 15% chance of it being healthy.

But as a dear relative told me- Our God is not a God that follows statistics and I take comfort in that.

There are three different scenarios that we will face when we go to our appointment on Thursday:

1) Complete and total resolution of the cystic hygroma! This is our plea and prayer that our baby will be completely healed. This is less likely according to our doctor, but she has seen it happen and I have had several people tell me that their babies were diagnosed but within a few weeks the hygroma resolved on its own.

2) The cystic hygroma is still there. If this is the case, they will do a Harmony Prenatal DNA test. It is a non-invasive blood test to test for several chromosomal abnormalities which include:

Trisomy 21: Down Syndrome.

Trisomy 18 and 13: Both have a high risk of losing baby in utero, and if baby is born will have severe heart defects and life span is extremely short.

Turners: Affects girls only. Short stature, physical deformities, learning disabilities.

*The ‘perk’ to having this test done is we will be able to find out early if we are having a boy or a girl 🙂

If this test comes back negative, more testing will be done to test for  Penashokier, Noonan and Roberts Syndrome:

Penashokier: Growth problems, underdeveloped lungs,  facial abnormalities, high chance of losing baby in utero or shortly after birth

Noonan: Unusual facial characteristics, short stature, heart defects, other physical problems and possible developmental delays.

Roberts: Characterized by limb and facial abnormalities, slow growth, mild to severe intellectual impairment occurs in half of all people with Roberts syndrome. This condition has been a particular one of interest to Bennett and I and our family as we have a nephew who has similar symptoms of Roberts but a official diagnosis has not been given yet- but he is such a wonderful baby and we would be blessed to have a child like him! Of course, we are wondering if it is genetic but it is too early to tell at this point until we have further testing done with our baby.

3) Our baby has passed on to be with Jesus. As hard as it is to type those words, I must realize that this could be what we face come this Thursday. If that is the case, a D&C (surgery) will most likely be needed. I think of Job and Paul in the Bible- how they asked God to deliver them from their trials- but they weren’t delivered in the way they had hoped. This is a reality but over these past few weeks the Lord has truly surrounded me with His love and I know even if this happens- He is still good.

A year and a half ago, we lost our first baby. This month he/she would have turned one. I struggled greatly with this loss and went into a deep depression. This time around I learned not to run from God when the pain is great- but to run to Him. He truly is sufficient to handle ALL of our struggles and He provides peace that no one and nothing else can.

My mom and I started to do a Bible study together called “Stronger” after we found out about the potential difficulties the baby may face. Today’s devotion was all about stress and anxiety, how applicable! 🙂 One quote in particular resonated with me and I wanted to share:

“In fact, God never intended for me, or you, to be strong enough on our own. We were made to need Him, run to Him, and surrender to Him. As I see it, we have two choices when confronted with the stress of our lives. We can succumb to greater anxiety, fear and pain and continue to rack our minds for solutions and exhaust our bodies with worry. Then try to squeeze answers from other fallen people whose stress is probably greater then ours. Or we can choose to surrender our stress to the strength of God. HE IS STRONGER.”– Angela Thomas

When we give our stress and worries to God, we aren’t saying they don’t exist or that they aren’t difficult and incredibly painful. We are saying that:

“These worries I carry are legitimate concerns, but God is faithful and good. This situation I’m facing is awful and scary, but God is with me and promises He’ll never leave me”-Angela Thomas.

So with those words in mind, our hearts desire and prayer is that we can post on Thursday- Praise God! Our baby is healed!- but we may have to post that the cystic hygroma is still there and additional testing is being done. We may have to post that our sweet baby has gone to be with the Lord. And if we have to post either one of those things- I will still say with confidence that He is still good and He is stronger.

If you are reading this, you most likely have been following our story and have been praying for us. We truly have felt your prayers and we can not thank you enough! But I also know that you may be struggling with issues that are drowning you, that you feel you cannot handle on your own. Know that God is stronger and take comfort in Him.

Psalm 91:4 “He will cover you with his feathers. He will shelter you with his wings.His faithful promises are your armor and protection.”

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Steady My Heart

One song that has been on the forefront of my mind this past week has been Kari Jobe’s “Steady My Heart”- and God has answered that desire and truly has steadied my heart.

I want to thank each and every one of you for your prayers–I was completely blown away last week when we had over 10,000 views of the blog post asking for prayer. I posted it for local family and close friends to see- yet people kept sharing and sharing and we had people from all over the world viewing the post and praying for us! Bennett and I were, and still are, blown away by all the support, love and prayers. We both truly feel peace and strength that can only come from Jesus alone. And please forgive us for not being able to respond to every post and comment- but know we have read every single one!

I originally had a doctors appointment scheduled for today, but had received some words of caution about having too many ultrasounds from some trusted friends in the medical profession. I also had trusted friends in the medical profession tell me not to worry at all about having too many ultrasounds- but I would rather err on the side of caution, plus termination is not an option at all so there really was no need for me to go today, just for my own personal assurance. Our next appointment is Thursday the 21st so I would greatly appreciate your prayers. I will be a few days shy of 12 weeks and they will do an ultrasound as well as several blood tests.

Our specific prayer though is this- that we would see a healthy baby, no abnormal fluid with a strong heartbeat. We would love for you to pray with us this prayer as well!

Again, we are thankful for you and your prayers. We know no matter what- this is a part of our unique story that can be used to glorify God and that is our  ultimate desire and prayer.

Asking For Your Prayers…

Today we planned to announce our pregnancy with joy and excitement, but instead we are announcing with fear, love for our child and a plea for prayers.

We found out in September that we were pregnant and we were ecstatic! It was such a direct answer to our prayers and started to fill my longing to become a mother. Ever since I can remember I never desired a career or any other occupation. I want to be a mother. We went to our first ultrasound two weeks after we found out, only to be told that we most likely would lose this baby. All the fears of my previous loss came running back, yet I asked God to work a miracle and that we would see a precious heartbeat at our next appointment. A week later, we returned and we saw a beautiful heartbeat- yet we were told once again we would lose this baby. The heart rate was too slow (109bpm) and the baby was measuring too small. I began to pray again and ask God that at our next appointment the heart rate be 150pm. The next week we showed up, the baby doubled in size and the heart rate was between 148-150bpm. I was thrilled and the doctor told me my miscarriage rate was down to 5%. I began praying again that at our next appointment that the baby would measure at least nine weeks as it was still on the small size. Today was that appointment and the heart rate was even better at 186bpm and measured at 9 weeks and 2 days! I was so happy- but yet I could tell the ultrasound tech was being quiet and something wasn’t quite right.

The doctor told us that there is abnormal fluid in the baby’s neck and abdomen, known as Cystic Hygroma. She told me that my chances of losing this baby went from 5% to 70% and if I do carry this baby to term it is at high risk of birth defects, heart defects and other conditions such as Down Syndrome, Turner Syndrome and several other conditions.

I am asking for your prayers. God has been faithful and has answered specific prayers already and I am asking for more. First, I am asking when we go back next week that there will be no abnormal fluid and we will see a perfectly healthy baby. Second, I am asking that if there is still fluid around the baby- that God will protect this little one and either heal later in the pregnancy or give us the strength to help this child the best we can with whatever conditions he may have.

Third, and the most difficult is that if we lose this child that I will not become angry or bitter. That I will praise God no matter what. As I type these words, it is so hard because I love this child and no matter what difficulties the child faces medically- it will never change my love and desire to have this child, yet I must understand and accept that losing this baby is a very real possibility. I know my God is big enough to overcome these 70% odds, but I also know that things happen-chromosomal abnormalities that can cause issues such as these.

Here is a picture of our little one to keep in your prayers (we saw him wiggling around and his little arms and legs–never doubt that life begins at conception- proof right here!)-

photo (2)

Prayers for Vaginismus Women

Once again, it has been a few months since I have posted and just felt the need to update- especially in light of the many emails I have been receiving from many women struggling with vaginismus. If I have not yet replied to your email, please be patient and know that I want to read every word and want to make sure I have the time to reply in a thoughtful manner. (Now, if you sent me an email 2 months ago and I have yet to respond its probably safe to say it ended up in my Spam mail so please resend 🙂 )

God has been breaking my heart again over this condition of vaginismus. It is so easy for me to forget my experience and to put it behind me and forget that other women are enduring what I did a few years ago. Between heart wrenching search engine terms to emails filled with stories of heartache I am reminded how this is not just a physical condition, but a mental, emotional and spiritual one. It doesn’t just affect the woman herself, but her relationships and it can easily destroy a marriage.

Some recent search terms that have led people to my blog have included “How Could God Allow Vaginismus”, “Vaginismus loneliness”, “Help my wife has vaginismus”, “Jesus healing Vaginismus”, “Emotional Toll Vaginismus”,  “Vaginismus, my husband wants to leave me”, “Vaginismus, does it last forever?” and many more. The emotional pain and desperation behind these search terms is evident. I have also received emails with stories of husbands having affairs due to the drain this condition leaves on a marriage.

I am asking for your prayers. I obviously will not list names to protect the privacy and confidentiality of those who have emailed me- but please pray for these woman. That they will not be ashamed to speak up, seek treatment and get the help they need. That God will save their marriages, heal them from their physical condition of vaginismus but also the emotional and mental strain that comes with it.

A verse that God has placed on my mind lately that I hope will be of encouragement is Psalms 91:15

“He will call on me, and I will answer him; I will be with him in trouble, I will deliver him and honor him.”

God will answer us, He will be with us in trouble, and He will deliver us and honor us. The more I meditated on this verse I realized that it didn’t jump straight from ‘I will answer him, I will deliver him’. It is ‘I will answer him, I will be with him in trouble THEN I will deliver him….” SO many times in life we want God to answer us then immediately deliver us from our troubles, but I am comforted by this verse that God is WITH US in our troubles.

Take heart sweet friends and know that God is with you in your troubles and He promises to deliver you and honor you. You may not know when or how but He will.

 

Day 4 of NY, Day 2 of Treatment.

A quick update as it is late and I am quite tired but wanted to briefly fill you all in on our first two days of treatment.

I first want to say that I LOVE the doctors that are working with us. They could not be any better! They have been super helpful by providing us with coupons, directions to wherever we want to go, and discounted broadway tickets (which we are hoping to go see a show sometime while we are here). Plus they give us their contact information so we can call them whenever we need them- and not just for medical reasons- even for if we just need a good idea what to eat for dinner. 🙂

Yesterdays two sessions were mainly ‘talk sessions’. Talked about our jobs, our medical history, mental health history, our ‘vaginismus story’ and a lot of just getting to know one another. The doctors do a have a great balance of maintaining a professional atmosphere but also a relaxed atmosphere. You can tell they have a passion for helping women/couples with this problem and it clearly shows.

Today’s two sessions were a bit more trying as it was my first day of actual treatment. And just because I know Dr. Ross sometimes reads my blog- there were some very intense ‘training sensations’ (a.k.a. PAIN!-ha) but I was able to do whatever they asked and I am happy about that–but to be frank- it was a physically and emotionally difficult two sessions. Bennett and I ended the evening going to a beautiful beach and that was wonderful and a great way to end the day! The sand is so white and they have these beautiful stones that I never have seen on a beach before so we collected quite a few of those and just took a long walk.

God has been so good to us and I really feel He is teaching me a lot these past four days while I have been here. There is a lot of ‘letting go’ I need to do and I need to simply accept God’s unconditional love for and find FREEDOM in that! I love that word-freedom! I often allow myself to stay in bondage- instead of dealing with the issues up front, hiding them from God, etc. But the bottom line is that the Lord has a jealous love for me, an unconditional, pursuing, passionate love for me and He wants to set me free. There is nothing I can do that can set myself free or earn His love- I must simply surrender to Him and allow Him to do the work in me.

NY Bound!

This will be a quick post as I have yet to start packing…and it’s 6:30pm and we are leaving at 7:00am tomorrow morning…but I am almost done with a weeks worth of laundry 🙂

I can’t believe it is already time for our treatment–it has been a whirlwind the last four months–meeting the Hatters, going to Citylight, making the decision to go to the Women’s Therapy Center–but the awesome part is seeing God’s hand in it all. He has been so faithful and I know he will continue to be.

People have been SO generous–I will do a post more about that later but it has overwhelmed Bennett and I. Our church family has been AMAZING, the Hatters, friends, parents (Thanks to mom and dad for an early birthday present of a GPS!!), etc. etc. It has really challenged Bennett and I to give more of ourselves, our time and our money. We have been living so ‘comfortably’ and that has got to change.

Please pray that we can both get a good night’s sleep. Pray for my anxiety level (ha) as I have been somewhat anxious the past few days and need to continually remember to cast my cares upon the Lord. Pray for ministry opportunities while we are there. Pray for safe travel. Pray for God’s healing in all aspects of our personal lives and maritial life-physically, emotionally, mentally and spiritually. Pray that God will use this situation to bring glory to HIM as it has already and I know it will continue.

Also, pray for a fellow blogger friend of mine. I have not met her in person yet but many of you may know her. She JUST now had triplets–as far as facebook says they are doing well but they are tiny so please keep them in your prayers 🙂

Friends and Family,

God has continued to lavish us with His love, peace and direction- and there has been one HUGE way that God has rocked our world recently that we haven’t really talked much about. This is difficult for us to share as it is personal in nature, and quite frankly, embarrassing- but we want to show what an awesome God we serve that He cares about every aspect of our lives. We also want to share because we need your prayers. So please read below with an open mind and with the knowledge that the below information will be specific and to the point.

Bennett and I have been struggling with the past year and a half with a condition called Vaginismus. Vaginismus is “the involuntary, instantaneous tightening (spasm) of the pelvic floor diaphragm. This spasm causes the openings of the female genitals to become constricted and makes penetration painful or impossible” (Private Pain, Katz and Tabisel). So how exactly did this play out in our lives?
Bennett and I were not perfect by any means but we saved ourselves for each other- we had not even kissed each other, or anyone else for that matter, before our wedding day. On our wedding night- and the rest of our honeymoon- we were physically unable to consummate our marriage. We thought that maybe we were just stressed and ‘nervous newlyweds’- but this past year and half proved otherwise.

Since then, we have been able to technically ‘consummate our marriage’ but it has been with severe pain on my part- which has manifested itself in other symptoms affecting my digestive and urinary systems. We have been to three different doctors. One in Rocky Mount, one- who is the head doctor of Physicians to Women- in Roanoke, and another in North Carolina. The one in Rocky Mount misdiagnosed me with ‘just an infection’. The one in Roanoke misdiagnosed me with vulvar vestibulitis (google that one) and the third has correctly diagnosed me with Levator Syndrome/Vaginismus (as well as a slew of other conditions that are related- interstitial cystitis, etc.). None of the treatments worked. I even tried treating myself with a ’Vaginismus Kit’ which not only did not work but aggravated the other conditions as well.

So you are probably wondering- where is the awesome God thing coming into play here? I have mentioned in previous posts that we left our church and are at Citylight. We did not know all the reasons why we were feeling led away- we just knew that we were. Some of our friends who use to go to a church in Franklin County started going to Citylight a few months ago. They had met with Bennett and asked him to consider praying about coming as well. A few months later we made our decision and met up with them to talk about it. The discussion got turned to struggles and a thought popped in my head- which I firmly believe was a ‘God thought’. I blurted out that Bennett and I were unable to have sex without pain. I am not even sure why I blurted it out as I typically did not openly discuss my condition- but God wanted me to say something! The couple stated that there was another couple at Citylight, Jessie and Philip Hatter, who for nine years had the same exact condition that we did. I was so shocked. For a year and a half I had not met anyone else who had the same diagnosis as myself. They asked permission to discuss our condition with this couple. We agreed. I knew right then and there that God was working.

When I got home that evening I sent Jessie a message. She quickly responded back and graciously stated that she wanted to help us through this process. I remember being so overwhelmed by how God provides. I had felt very alone for the past year and half. A lot of my friends were getting married, having children, enjoying the ‘romantic, intimate’ part of their marriage. I was struggling with bitterness, depression, jealousy and discontentment. To talk with someone who lives in the same area and understands what I am going through was an awesome God connection. God understands that we need each other. And to make matters better- Jessie has been cured! For the first time since our honeymoon, I felt hope that we too would be cured.

I’ll stop right here to address why I keep referring to it as ‘our condition’ or ‘we have Vaginismus’. Yes, I am the one with physical condition but God has commanded us to be of one flesh and it affects Bennett just as much as it does me. Bennett has been an extremely supportive husband during this difficult period. Lots of men would have been far gone by now. Bennett has stood by my side through the whole process and I am blessed to have him as my husband. As someone once told Jessie’s husband, Philip, while he was enduring the same trial- “How incredible it is that God thought you worthy enough to handle this condition”. Most men would have run, or would have at least resorted to sin- but Bennett has been pure, faithful and loving.

Jessie and Philip had us over to their house a week or two after I had sent her the initial message. We already felt a bond with them because of being Christians, but the connection we felt with them because of having the same condition was almost therapeutic to Bennett and myself. We shared our story, they shared theirs and they promised prayers, encouragement and all the help we needed to get through our struggle with this and to be cured. They discussed with us in length about how they were cured- The Women’s Therapy Center located on Long Island, NY. This treatment included no surgery, no medications, no funky electronic devices being inserted into your body. They encouraged us to at least pray about the option.

Once I found out the cost of the treatment I immediately told Bennett there is no way we would, or will ever go. Bennett, on the other hand, wanted to board a flight and go the next day. 🙂 I told him that I would pray about it but I wanted to try the “Vaginismus kit” first. One session of that was enough to tell me that I couldn’t do this on my own. God started to change my heart. God brought Jessie and Philip into our lives for a reason- and I firmly believe to be cured. Jessie struggled with Vaginismus for nine years before being cured. She tried 10 different doctors/treatment methods (including surgery) with no success. If it wasn’t for meeting her- I could have been doing the same thing. Dishing out money and time, putting more strain on our marriage and our emotional/physical state for years- and all for nothing. Jessie and Philip continue to tell us how awesome it is that we are dealing with this now, getting a cure, and getting it behind us so that we can have a healthy, happy marriage as well as have children later in the future.

We continued to meet with Jessie and Philip. They continued to pray for us. God continued to work on my heart and I began to feel a peace that this is what God wants us to do. We did a video chat with the doctors from Women’s Therapy Center who did confirm that I had Vaginismus by my symptoms and assured us that I would be cured.

After much heart struggling with the cost, time and craziness of it all we have decided to go. July 18th-29th we will be in treatment at the Women’s Therapy Center. We are trusting God with the cost, as it is a substantial amount of money. But we know that God will provide. He has already blessed us financially and we will be able to pay for hopefully a 1/4th of the cost on our own. We are hoping to get some reimbursement from our insurance company but that will not happen until our treatment is over and done with and are unsure of how much we will actually receive.

God continues to confirm that this is where He is leading us. He had us leave our church which caused us to meet Jessie and Philip who have supported us, loved us and prayed for us. I have earned enough sick time that I will be paid for the full two weeks I will be in New York. Bennett just started a job at Lowes and he was unsure if he would be able to get off and they said it wouldn’t be a problem.

For those of you who are not quite on board-that is understandable. It’s a lot of money and it seems odd that a doctor here in Roanoke can’t fix it- but here are a few things I want to reiterate.

1) God has commanded a husband and a wife to be one and Bennett and I are not able to do that. I feel that me putting my treatment on the back burner and not actively trying to find a cure is sin. This condition prevents me and Bennett from being one, fosters temptation for us to fall into sexual sin and puts a continuous strain on our marriage. This condition is Satan’s perfect foothold to get into a marriage and we do not want him to have this foothold any longer. It would be selfish of me to ignore the problem and to essentially ‘make’ Bennett have a sexless marriage.

2) We want to have kids. Having this condition makes it extremely hard to conceive.

3) This pain is not just ‘a little bit of discomfort’. Gynecologic exams have me practically jumping off the table. When Bennett went to my first OB/GYN appointment and saw the pain that I was in he promised that we would never have to have intercourse again until I was cured. Relaxation techniques, different lubricants, ‘setting the mood’- these are things that are ‘nice’ but do not make a difference for this condition.

4)Jessie Hatter has tried various doctors in Roanoke and outside of the Roanoke area. It would be pointless for me to waste the money and time doing the same thing when I can clearly see what did work and what did not work for her

5) Shortly after I was diagnosed I remember telling Bennett that ultimately, the only thing that could make all this pain worth it is if God could use us and our condition to bring glory to Him. Jessie and Philip have been used so greatly by God in our lives and we want to be used as well. 2 Corinthians 1:3-5 states “Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God. For just as the sufferings of Christ flow over into our lives, so also through Christ our comfort overflows.”

Jessie and Philip have been a ‘comfort’ to us and we have clearly seen the Lord through our relationship with them. Philip told us the other day that him and Jessie said that the nine years enduring this condition is all worth it because they are being used by God in our lives. We want to be used as well-especially in our unique ‘taboo’ situation which often goes unspoken about. I am so incredibly thankful that Jessie and Philip cared less what anyone else thought but spoke boldly about their condition and how God used it in their lives.

Ultimately- this condition, this trial, this diagnosis- it’s not about us. As easy as it is to focus on ourselves through this- God allowed this to happen so that HE could be glorified. Exodus 19:6 states, “But I have raised you up for this very purpose, that I might show you my power and that my name might be proclaimed in all the earth.” Already God is using this condition for me to connect with other women- through email, facebook and even a few phone conversations. One individual lives in the New York area and we are planning to meet up while we are there for treatment. These are individuals that I would have never crossed paths with- but now we are sharing our personal life stories with each other and they are definitely hearing about the great God of my life story.

With all that being said- please pray for us. The cost is daunting, the treatment will be difficult and all the details before and after will be stressful. But one thing I know for sure is that God cares, He loves and He is active in our lives. This post is already getting lengthy but I will soon post specific and tangible ways that God has clearly laid out this path for us. I am humbled by how easily and often I doubt- yet God continues to prove Himself and His plan to me in spite of myself.

Also, if you or anyone you know struggles with this condition- feel free to give them our contact information (carriewampler@yahoo.com or for any husbands who need support bennettwampler@yahoo.com). God does not want any marriage to struggle through this. He desires healing for all. Praise be to our God who loves!

Photo Shoot and Prayer

A dear friend of mine volunteered to take some pictures of Bennett and me. I had been wanting some pictures as we near our one year anniversary, and my friend is looking to intern at a photography studio. Below are a few of the finished products.

Okay, so you are probably wondering who are the people in the last two pictures. They are an answer to a specific prayer. No joke. Bennett and I had been praying for some strong Christian friends, that are around our age, that go to our church-and God answered that prayer! Now I am asking you all to join us in praying for them. Laura found out two weeks ago that her mother has pancreatic cancer. Two days ago Laura found out her mother’s cancer already spread to her liver. The future looks dim for her mother’s life on this earth. Please pray first and foremost for her mother’s salvation, as it is not certain if she knows the Lord. Secondly, pray for strength for Laura and boldness on her behalf. Also pray for her husband Daniel, that he would support her in the best way he can.