Life Update

It seems that I only blog when I feel I need to anymore. But it seems like the more logical thing than a super long Facebook post. As most of you know, we are pretty private people. We have had many hardships during the last 10 years of marriage but we recognize how incredibly blessed we are as well.

We've kept some parts of our lives private but I've felt I should share a couple of these things with you. We've shared parts of our current life situation with a handful of individuals and them knowing that our paths aren't going the way that we expected have asked questions. We're hoping this approach will help answer some of those lingering questions people have.

When Scott and I were engaged, we talked about our future family, and adoption/foster care was something we talked about and knew we'd do at some point. This was prior to knowing that it would be nearly impossible to get pregnant.

Back in April we decided it was time to start the process of getting licensed to be foster parents. We took 12 weeks of courses (3 hour classes each Tuesday), filled out countless pages of paperwork detailing our inner most feelings and every detail about family relationships, did hours of "homework" for our courses, were interviewed, had 5 loved ones fill out questionnaires about us, had a home study by the state, took extra classes on carseats and CPR, and after 4 months of lots of work we received our foster care license. Loving friends gave us bunk beds, a crib and changing table. We have a kids room all ready to go. We received our license in August and decided to hold off on opening our home because of some trips we had planned.

During all of this, Scott's health started to decline. For several years now he's struggled with not feeling well. He is constantly fatigued, has stomach issues, shortness of breath, feels like he's going to pass out and has chest pain on a daily basis. Things like his 35 minute commute to work would completely exhaust him. Over the past 3 years we've been to countless specialists trying to figure out if it was heart issues, a neurological problem, a sleeping disorder, stress, anxiety or food allergies. After lots of co-pays, paid deductibles, pokes and prods, and every test they could think of, Scott was told repeatedly that it was probably just stress and that physically he was fine.

In November, after some convincing from Scott's family, we decided it was time to utilize the amazing resource that we had here in Phoenix and go to the Mayo Clinic. In December we met with a cardiologist and Scott underwent several tests including a tilt table test that determines your risk of fainting based on posture. A test that can last up to 90 minutes lasted 7 minutes for Scott as he almost immediately passed out when tilted into an upright position. Not only is he likely to faint but his heart stops when he passes out. This test was a huge scare for both of us.

We went back to see Scott's doctor at the Mayo this month and he was diagnosed with a condition called POTS. You can google POTS if you want details but basically when he changes positions his blood pressure struggles to regulate. His heart rate is continually changing which causes severe chest pain. He is currently on medications and they've been very hard on him. It elevates his blood pressure, and some moments he feels well but most of the time he still feels really terrible. He's very sensitive to medications so he's prone to side effects. His cardiologist wants him to see a neurologist at the Mayo Clinic that specializes in POTS, so we are waiting on that to be scheduled. He is currently scheduled out to May but they are going to try and get him a sooner appointment.

So all in all, this has changed things for us. Scott sold his business back in August, mostly due to his health. We've put foster care on the back burner until Scott is feeling better.  Our first priority right now is him. We know that a lot of people have wondered about these things, particularly the fact that he's not at church lately. But mornings are the hardest time of day for him. This is when he experiences the worst pain, dizziness and fatigue. But we are hopeful that his body will regulate to these medications so that he can be fully functional again.

We want you to know that we appreciate all the love and concerns. We're accepting any prayers you want to send our way. :)

Post TAC

Well, I am now 9 days post TAC. Dr. Haney was so kind and wonderful. We were able to chat with him for about 20 minutes before the surgery. We had the procedure done at a surgery in downtown Chicago. We were able to walk there for the procedure (took about 5 minutes) and then took a cab back to our hotel. My friend Natalie was scheduled to have her surgery first but for some reason they changed the order last minute.

Scott and I had to be to the surgical center at 5:30am. I got very little sleep the night before, and despite setting 4 alarms I was still so worried about getting up in time. We had come all that way and had waited for 2 months since scheduling to get to that point and so of all mornings I needed to be up on time. I woke up about 4 and got up and got ready. I really wasn't nervous until that morning. We arrived about 10 minutes early and were taken back at about 5:40. The waiting room was pretty cool, it had a glass roof and you could see the Hancock tower through it.

Upon going back, they do a pregnancy test and have you get in a hospital gown. Dr. Haney came right in after I was dressed and sat there and chatted with us as the anesthesiologist put the IV in. The nurse had told me that he would give me a shot to numb the area before sticking me with the IV but he didn't. Upon asking about it, he said he didn't want to stick me twice. The IV hurt pretty bad but from the time he put it in and the time they put me out was about 3 minutes. They took me back immediately after putting the IV in and didn't even have time to give me some feel good medicine. The next thing I knew, I was vomiting into a bedpan as I was waking up.  I knew I'd have an incision but nothing I read from anyone having the TAC said anything about the pain being that high. I kept telling them I was in pain and they kept adding pain meds to my IV and eventually gave me some liquid Lortab which didn't help at all.

I was in recovery for a couple hours, trying to wake up. They put a catheter in prior to the surgery and have to remove it before you leave. Then they pumped me full of liquid so that I could go to the bathroom before leaving.

I was pretty hazy but I do remember the pain being so bad that I had to remind myself that this was better than losing another baby, or being on bedrest for 6 months during a pregnancy. We were back to the hotel by 12, and I pretty much slept for 2 days. They gave me something for nausea, so I never threw up again. I didn't really have an appetite but merely ate enough to take meds every 4 hours.

Dr. Haney came to our hotel the morning after the surgery. He made sure we were feeling fine, and let us know of some things that might happen after the surgery and then was off. He really is a fantastic doctor. 

We flew home 2 days later and that took a lot of energy but it was so worth it to be home.

As far as the surgery went, it went really well. The incision is very low and about 4 inches across. Dr. Haney put in sutures that dissolve, and some "tape" across it. He said that if the tape is still there on day 10, to take it off (I think it's more like glue). So that is on the list for tomorrow. The pain has gotten better each day. For the first 5 days I needed someone to help me out of bed and out of chairs.  Moving around hurts a lot, but it does help you heal faster, so I did that as much as possible.

Dr. Haney ended up putting in 3 bands. I had heard of him putting in 2 bands for some people but we were surprised to hear he did 3! Each band can hold up to 50 lbs. He said that my cervix was long enough that after putting 2 bands in, there was plenty of room for a 3rd. He puts all 3 at the top of the cervix.

So where do we go from here? We try to get pregnant. Prayers on our behalf are appreciated. :)

And a shot of us pre-surgery.

Pre-TAC story

In 2 weeks, I’ll be going to Chicago to have a TAC (transabdominal cerclage), by Dr. Arthur Haney. A lot of people have asked why we’ve chosen to go this route over the basic cerclage that is done at 12-16 weeks of pregnancy. So I’ll give a summary of my story and how I came to this decision.

(To preface, I am not currently pregnant) 

After 3 years of infertility, we got pregnant with our son Adam. At 19 weeks I was admitted into the hospital after finding out that I was dilated and my sac was hourglassing (basically trying to fall out). After a week of being on bedrest in the hospital (in the Trendelberg position) and taking meds to try and stop contractions, my body decided it was time to deliver. The labor went from mild contractions to full labor in about a 30 minutes period. I delivered my baby boy on December 8^th, 2013 at 6:40 pm. My water never broke and he was born in the amniotic sac, which they took him out of. He was lifeless, but we found out that he did have a heartbeat. He lived for about 45 minutes. 

Because of how I dilated and the circumstances of when Adam was born, I was diagnosed with an incompetent cervix by my OB. For those that don’t know what that is, it’s basically that my cervix isn’t strong enough to hold that much pressure and so I will start to dilate without contractions.

After I delivered, my doctor told me that next time I had a baby we’d have to do a cerclage. As I waited for my follow-up doctor’s appointment I read up on a cerclage. Basically they go in and sew up the bottom of your cervix when you are between 12-16 weeks pregnant. I thought that was cool, and friends and family started telling me about people they knew that had that and had successful pregnancies with a cerclage. There was hope! 

Then I went in to see my doctor for my post-delivery follow-up. We talked about the cerclage some more and he told me that I’d have to be on bedrest after the cerclage for the remainder of the pregnancy. I left his office and got to my car and sobbed. I was so discouraged and thought about how because of that, I’d only be able to have one more biological child because I couldn’t be on bedrest with a little one at home, I’d have to quit my job, and Scott would have to do everything including work, cook, clean, yardwork, wash the dog, etc. For over a year we’ve been preparing emotionally and financially so that we could get pregnant again and go forward with this. But everytime I thought about the cerclage, I got so depressed and so stressed out. I knew that the odds of having a live birth with a cerclage were about 70%. And that 70% includes preemies. I started thinking about where I would bury another child if I lost another one. Should I buy multiple plots? Would I move Adam to be with any of the others that I could potentially lose? These are the things that haunted me as I thought about this. I would be laying down for 23/24 hours each day while on bedrest, thinking that there was a possibility that it may not end in a happy circumstance. I was having anxiety over how I was going to have to make 6 months’ worth of freezer meals. How could I ever prepare for that? Especially with no immediate family close by. 

I attend a bereavement group at the Banner Desert hospital where I delivered. Scott and I go each month and talk with other grieving parents about triggers, healing techniques and it’s a chance to say our baby’s name without that awkward moment. We look forward to it each month and feel so much better after we go. I’ve met some incredible friends there, one of which is Natalie. Natalie just lost her daughter a couple months ago, and lost a son almost a year ago, so two babies in one year. She is the one that told me about the TAC. She had been researching to see what she could to do prevent another loss and the doctor’s believe she has an incompetent cervix as well. She told me about Dr. Haney in Chicago that performs the TAC. There are only 3 in the nation that do it regularly. I researched and had a phone consultation with Dr. Haney and both Scott and I felt really good about this procedure. There are other doctor’s in the nation that will do a TAC laparoscopic, but the reason that Dr. Haney and the two other doctors prefers not to do it that way is because they likes to be able to feel with their hands to make sure that the TAC is the right tightness. To me, it’s totally worth traveling so I know that I’m getting it done right. 

So what’s the difference between the 2? Here’s the rundown:

Regular cerclage:

• ·         Done at 12-16 weeks of pregnancy.

• ·         Stitch is placed on the bottom of the cervix vaginally.

• ·         Have to be on bedrest the remainder of the pregnancy, can be up for one hour a day.

• ·         It’s either snipped at 37 weeks without pain meds, or at 39 weeks after an epidural.

• ·         Gives you a 70% chance of having a live child, but some of those are preemies.

• ·         Can still dilate and even tear the stitch and cervix.

• ·         Have to be on pelvic rest the entire pregnancy.

• ·         A cerclage has to be done with each pregnancy.

• ·         If on fertility, you have to be heavily monitored to make sure you don’t produce more than 1 egg, because the weight of two babies causes a higher risk of delivering sooner.

• ·         Considered a high-risk pregnancy.

• ·         Have a risk of infection, or pre-term labor after procedure.

TAC

• ·         Is done mostly pre-pregnancy through an incision made where a c-section would be.

• ·         A band is tied around the highest part of the outside of the cervix.

• ·         Can be done up to 10 weeks in pregnancy.

• ·         No bedrest is required.

• ·         A woman’s cervix will never thin, shorten or dilate.

• ·         It is permanent, so all babies are delivered c-section, and the procedure only needs to be done once.

• ·         D&C’s can still be done if necessary as well as a hysteroscopy.

• ·         Does not affect any method of fertility, including IVF.

• ·         Chance of infection is very slim and can be treated before getting pregnant.  

• ·         The band can hold over 100 lbs. of weight from the uterus. Many woman have had the procedure had have had twins with no complications.

• ·         98% chance of a full-term birth.

A TAC is still considered an “experimental” procedure, but I believe it will be a common procedure in the years to come. Dr. Haney works for the University of Chicago, was an OBGYN for years, a fertility specialist, and now does over 200 TACs a year and has an amazing success rate. Luckily our insurance will cover the procedure, when some won’t. Some insurances will require a regular cerclage first, and if that fails then they will pay for the TAC. So basically they will only pay if you've had two losses, which is so sad to me.

We honestly feel really good about this decision and are very excited. Scott and I met with my OB before scheduling the surgery and talked about it for about 45 minutes, and even though he knew little about it, he was excited for us. A lot of people have been wondering why we are going to “extreme measures”, when we haven’t tried a regular cerclage, and for me the answer is simple, I’ll do whatever it takes to prevent losing another baby. It also seems like a no-brainer to me when you look at the odds and benefits of getting a TAC.

Most asked question: Will this help us get pregnant?

Answer: No, so we could still use a lot of prayers please.  

One of the coolest parts of this? Natalie and her husband are going with us, and we are having our surgeries on the same day, back to back. We are so excited to go with them!  

I’m just hoping that if my story can help at least one mother from having to endure another loss, then it’s totally worth sharing with the world. 

I’ll post again after the surgery and give you an update.

Adam's 1st Birthday

Last month we celebrated Adam's 1st birthday. Luckily there were minimal tears, and instead lots of joy and precious moments remembering our little one. I took the day off of work and Scott and I did things that we think Adam would've liked.

We started out the day by having Peter Piper Pizza. We ate and played games. It was a lot of fun. 

 We then had a birthday party in the evening. We invited 2 of our favorite families to join us. We had a special lesson on eternal families, ate cake and the kids played some Super Nintendo.

 This was my first attempt at a double layer, homemade chocolate cake. I think it turned out pretty well!

 We really enjoyed the day and tried to make the day a day of celebration, rather than a day of tears. Grandma and Grandpa Marks took Adam a Christmas tree and balloon on his birthday. We're so grateful that he is buried in a place where we have family to go and visit him.

Happy birthday sweet boy! We love and miss you!