Sunday, May 18, 2014

My Miracle

If before you were born, I could have gone to Heaven and saw all the beautiful souls, I still would have chosen you.

If God had told me, "This one will one day need extra care and needs," I still would have chosen you.

If He had told me, "This soul will make your heart bleed," I still would have chosen you.

If He had told me, "This soul will make you question the depth of your faith," I still would have chosen you.

If He had told me, "This soul will make tears flow from your eyes that could fill a river," I still would have chosen you.

If He had told me, "This soul may one day make you witness overbearing suffering," I still would have chosen you.

If He had told me, "All that you know to be normal will drastically change," I still would have chosen you.

Of course, even though I would have chosen you, I know it was God who chose me for you.

By Terri Banish

I am so lucky to be Clark's momma. I am so lucky to have been blessed with such a special little life. When we first found out about Clark's Spina Bifida I really struggled with trying to understand why this happened to us. I felt betrayed by God. I felt alone. It wasn't until a few weeks later when I was talking with a dear friend of mine and she was sharing a conversation she had with her husband that I fully understood God's purpose for gifting such a special baby to Cameron and I. She said she was asking her husband, "Why Cyrena? Why did this have to happen to her?" Her husband simply replied, "Why not Cyrena? She is a woman of strong faith who loves the Lord." When I heard this it was like I heard the angels singing. I finally saw Clark's birth defect not as a burden but a gift. Now, I know you probably are thinking I'm crazy for thinking for considering my son's hardships as a gift but really it is. Clark has not only taught Cameron and I so much, but he has touched so many hearts in ways I didn't even know were possible. Clark has taught me what faith means. Clark has taught me the true meaning of sacrifice. He has really taught me the meaning of unconditional love. Clark has shown me what it really means to be a fighter and what strength really is. My son is a miracle. 

I know as our lives continue we will face many more hardships. I know that things won't always be easy. I know that there will be times where I forget how blessed we are and fall into the 'why me' trap again. All of these things are true, but I also know that God is faithful. I know that when I do struggle with the thoughts of feeling betrayed and alone, God will tell me to look at my son and I'll see all the mountains He has moved to make my life the masterpiece it is and will continue to be.

Much love, Cyrena

Wednesday, May 14, 2014

A Little Update!

Clark and I are still rocking! It has been 14 days since my water broke but he is still hanging on! We had an ultrasound today and Clark weighed in at 3 pounds 13 ounces! He is in the 69th percentile for his gestational age, what a chunk! Overall he is still very healthy and the only changes outside of his weight is the size of his ventricles. His ventricles are measuring at 21mm and 22mm, they are bigger but this is also to be expected.

I am doing okay with being admitted. It is very hard for my personality to be confined not only to one room, but to be stuck in bed all day long. I struggle with feeling closed in and have a hard time with not being able to take a wheel chair ride out for some fresh air. Although I have such a hard time with being admitted, I am finding peace with it. All of this is for our little guy and what better reason could there be than that!?

Cameron and I are still blown away with the amount of love, prayer, and support everyone has shown us over the past few months. We really appreciate the flowers, visits, and cards that have been sent our way! We love and appreciate you all so much!

A glimpse of what my days look like. The bottom monitor tracks Clark's heart rate and the top monitor tracks my contractions. 

Wednesday, April 30, 2014

Waiting, waiting, waiting!!

Well folks, we are almost to week 29!

I've been home for a week and a half and have had two appointments with Children's Mercy. From now until week 32 I will be scheduled for weekly appointments and starting on week 32 I will be scheduled for bi-weekly appointments. These appointments are very long and exhausting for this momma! We start off with a very long ultrasound where they track his movements for 30 minutes straight. During these 30 minutes Clark has to pass an eight point test called "BBP Testing," he has to move his body 3 times, move his extremities 5 times and practice his breathing for 30 consecutive seconds. He has had this test twice now and passed with 100% both times. If he fails the test then we have to undergo extra monitoring; so it's not a huge deal if he doesn't pass every time, but would be concerning if he regularly failed the testing. During the ultrasound he is measured to check his body size, weight, ventricles, and the amniotic fluid; they also check my internal incisions and Clark's incision. After the ultrasound we do what's called 'non-stress' and they track Clark's heartbeat for 20 minutes and watch for contractions.

At our appointment last week Clark's ventricles measured at 17mm and 17mm, one side has gotten a little bigger but this is part of the healing process and we were told to expect that they will continue to get a little larger. I had no signs of membrane separation, which is an indication of premature labor. The appointment went very well and had we had nothing but good news to come from it.

Clark taking a drink! Look at that little mouth open!
Today we had our second appointment and Clark's ventricles measured at 18mm and 19mm and he passed his BBP testing with flying colors. We got to see his face very clearly today and the ultrasound tech kept the camera on his face for about five minutes just so we could watch his cute little face! We got to see him yawn, drink some amniotic fluid (he was very thirsty!) and watch him play with his tongue! Unfortunately, today they noticed that I have some membrane separation and some amniotic fluid leakage that is concerning to the doctors. They monitored me on the non-stress test for longer than usual to make sure I was not having contractions and checked to verify that my water did not break and it has not so far. The doctors want me to come in on Friday to check up to make sure that there is no further membrane separation and that Clark still has enough amniotic fluid surrounding him. If there is more membrane separation or if I am leaking too much fluid, they will have to hospitalize me until they decide it is safe enough to deliver Clark.

- Clark's movements are amazing and he is doing so well at practicing his breathing!
Clark's face in 3D! So precious!
- My pain has been manageable and I am finally starting to wean off narcotics and able to use Tylenol for pain control.
- I am home!
- Our support system has been amazing! We are so lucky to have mom's that are willing to spend their days watching and taking care of me and our house!

- Although it is expected that Clark's ventricles might get larger, it's never easy seeing that number go up. We ask for prayer that the swelling slows down or stops all together.
- We ask for prayer that I don't continue to show membrane separation and that the leakage stops.

Much love, Cyrena

Thursday, April 10, 2014

Thursday, April 10th, 2014----Day +3 Since Surgery

Update from Cameron's mom, Jill, this morning at 11am:
Cyrena is doing great! She's off all machines and even got up and walked a little this morning!! She looks so good. What a champion mama she is! Praise the Lord for His goodness.
Cyrena is such a trooper!

 Update from Jill at Noon:
OK everyone... Pray. Cyrena is adjusting to getting pain relief from oral meds and being up. She is experiencing a lot of pain at the moment. The nurse put the monitor back on and she is contracting. Please pray!
Update from Cyrena’s mom, Julie, at 1:40pm:
Immediate prayer. .Cyrena has started contracting and low grade fever...serious situation..please pray
Update from Jill at 2:30pm:
They are checking everything…pray no infection.
Update from Julie at 2:45pm:
Update!! Prayer fever disappeared. ..contractions have slowed! !! She is finally comfortable. The nurse she didn't know how her fever disappeared. .! Will keep you updated.
Update from Jill at 3:30pm:
OK, no infection. Ultrasound was good. She was able to get up and go to the bathroom which helped. Clark’s heart rate is a little high. Contractions are much less both in time and intensity. We still need them to stop and for Clark’s heart rate to come down.
We just learned how quickly things can turn, but praise God His Hand remains steady.
Update from Jill at 5pm:
Cyrena is doing much better. They think it was a combination of bladder issue and not staying ahead of the pain. Cyrena had a low grade fever and they said if there had been an infection they would have delivered Clark today! Praise God that didn't happen!! Clark's heart rate has come back down, too. We are all breathing once again!
Update from Cyrena at 5:45pm:
Today has been okay. I had a rough start this morning and was contracting for over an hour. We are very excited that the contractions slowed, we want to keep Clark in there for at least 2 months! I'm doing so much better now but I'm still having abdominal pain. (Which is normal and expected) Clark's heart rate has been high today and they aren't too concerned about it because overall his movements and such are great! Thank you for all your love, prayers and support!
Update from Julie at 8:45pm:
Dearest friends and family, Cyrena came through all the pain and contractions.. Fever gone and is resting comfortably. I am pretty sure that this was the worst day of my life and the best day of my life. She was amazing..breathing through the contractions..following instructions..a new iv and other sticks..uncomfortable positions..hands in sensitive areas..poking..prodding and on top of it dealing with two major surgery sites. Lyle and I are so proud of this young mother. Our son in law couldn't be more attentive, caring and strong. God indeed knew he picked the right parents for our little guy Clark. As for all of blessed we are for every one of you for the love you send us thru likes and comments. I thank God for all of you and ask that He bless you all for helping us through this journey..

Wednesday, April 9, 2014

Wednesday, April 9th, 2014--Day +2 Since Surgery

From Julie at 12:30pm:
Update: it was so wonderful to walk into Cyrena's room and hear her sweet voice and see her smile! They will take her off the med that stops contractions and remove the epidural this afternoon. It may be a rough transition, but evidently an improvement. Cameron is doing well considering his constant care of Cyrena. Clark is moving around and they have to chase him around Cyrena's abdomen to attach the heart monitor. It took half an our followed by an ultrasound to find him hiding out the lowest area he could find! Thanks for checking in and Julie

From Jill at 12:30pm:
Cyrena slept through the night! Praise the Lord! Cam was able to get some sleep, too. They would like for her breathing to be deeper, her oxygen is now in her mouth. Please pray that with breathing exercises she will get deeper breaths. 

From Jill at 2:30pm:
More praises to God! Cam was having to take this week off work with no pay. His coworkers have donated vacation days to him for this week!!! Can you even?? My dear friend Lisa said to me early on "Our Father has this..." And does He ever. Praise His Name.

Tuesday, April 8, 2014

Tuesday, April 8, 2014--Day +1 Since Surgery

From Jill at 10am:
OK everyone Cyrena is having a rough morning. They were told to expect today to be the worst day. She's had a few contractions also expected but we want them to stop. Please pray. Clark's doing fine. Starting to wake up and move which is good but adds to the pain. Thank you so much.

From Julie at 11:15am:
Update: Cyrena, Cameron, and Clark's journey continues. The meds that stop contractions cause great discomfort for Cyrena. Because they angered the uterus with the surgery it wants to contract. She is fighting the pain like a trooper and they told her it would be the most miserable for the next two or three days. Your love, concerns and messages have been appreciated and amazing. ..I can't thank you enough...when I feel down I remember all of you behind us...Cyrena is tired and in pain as she is, she is being so strong and sweet..smiling at her medical team and thanking them...

From Jill at 4:30pm:
Cyrena is now sleeping pretty well. Really the first time all day. Thank you for praying. Cam is good. He's very tired, but being such a good husband and daddy!

Monday, April 7, 2014

Monday, April 7th--Surgery Day!

Update from Cyrena's Mom, Julie at 1:45pm--
Prayers please...Cyrena just went back for her surgery...I am at a loss for words...thanks for the prayers along the way. I am a mess...yes I know God is all over this, but I just seem to be scared anyway...Cameron is amazing and peaceful...Lyle is about like me:) As soon as we have updates I will share.....thanks for your support .....she should be out in 4-5 hours..

 Update from Cameron's Mom, Jill, at 5:35pm--
 We are giving all the glory to God...the doctors said that everything went just like clockwork!! They finished Clark's part in UNDER 20 minutes. They were able to use his own skin for closure and did not have to use a skin patch. Only the Lord... Cyrena did so well, that sweet little Mama. She is in recovery with Cam. Now our prayer is that there will be no contraction...s and that Clark's spine and cerebellum will settle in their right place. We are overwhelmed with God's grace to us. He heard and answered your prayers. May you all be blessed as you have blessed us!

Update from Julie at 5:45pm--
Praise God!! Surgery is done, Cyrena is awake and Clark is a trooper! ! thank you all for your prayers and thoughts and support. Please continue. .He listens and is pouring out blessings! I will keep everyone updated...

Sunday, April 6, 2014

Tomorrow is Surgery Day!

Surgery is tomorrow! Just wanted to give everyone a heads up that my phone will be off 9:30ish am Denver time and will remain off until I'm feeling well enough to respond. Cameron will keep you guys updated as much as he feels up to it, but please keep in mind that this will be a very sensitive and stressful time so please don't bug him too much! We love you all and will post in the morning before I go under at 11:30a Denver time.

Monday, March 31, 2014

Counting Down the Days

It's official, the surgery is scheduled for Monday, April 7th at 10:30am! One week to go!

After our long week of appointments, Cameron and I met with the board of doctors once again last Thursday. In order to be accepted for the fetal repair there are many qualifications you have to meet. When they initially performed the research trial on the fetal repair, the MOMS trial, one of the qualifications was that the moms BMI while pregnant couldn't exceed 35. This qualification in the study became a qualification once the surgery was opened to the public. My BMI did not meet this expectation and normally I would be turned down by every facility that offers this procedure. I am excited to announce that Dr. Crombleholme is starting his own research trial called MOMS Plus. The MOMS Plus trial allows mothers with BMIs 35-40 the option of fetal repair as long as they meet the other qualifications. I will actually be the first patient of the MOMS Plus study!!

Cameron and I are back in Kansas City for the week and will be flying back out to Colorado on Sunday!

Monday, March 24, 2014

A Denver Update

Cameron and I have been in Denver for a few days, we drove all day Friday and spent our weekend just being together. Today we had our first day of appointments at The Children's Hospital of Colorado. Our morning started at 8:00a with an MRI, which was very long! Clark was not a fan of all the noise! He was moving and kicking the whole time! (Yay for kicking!!) After the MRI we headed up to do a fetal echocardiogram (fetal echo) at 11:00a. A fetal echo is just like an ultrasound but looks, listens, and tracks the blood flow of Clark's heart and would show if there were any abnormalities. We are so thankful to announce that his heart is perfect! We then met with another ultrasound doctor at 2:30p who measured Clark head to toe. Clark is weighing in at 1 pound 7 ounces, very healthy! His legs are very long and measure in two weeks ahead of his gestational age and showed no signs of clubbing!

Left Foot
Right Foot
At the end of out long day of appointments we met with the board of doctors who determined if Clark and I were candidates for the in utero surgery, they called it our 'family meeting'. We met with a pediatrician, two high risk obstetricians, a geneticist, a MRI specialist, and the fetal surgeon.  During the family meeting we went over what the procedure would look like and all the risks that come along with it. After much discussion on if we should do the surgery or not, we decided we will proceed with getting qualified for the surgery. The next step for us is to meet with another anesthesiologist and another high risk obstetrician; we will meet with them Tuesday or Wednesday. The anesthesiologist will check to make sure that I can handle going under anesthesia and that I'll be able to come out of it with out any problems. The high risk obstetrician will go over my medical history and verify once again that the surgery won't be too hard on my body. Once we meet with these doctors, they will then tell the fetal surgeon if we are okay to book a surgery date!

- We are so thankful that our little Clark's legs are healthy and kicking!! We also praise God that his feet are growing as they should and are not showing signs of clubbing! Please pray that his kicking continues and that his legs continue to grow healthy and strong!

- We are so thankful that Clark's heart showed no abnormalities and is growing just as it should!

-We ask for prayer that we are able to pass the exams with the anesthesiologist and high risk obstetrician with no problems!

-We ask that you pray over our hearts and minds. We are very drained emotionally and physically!

Much love, Cyrena

Monday, March 17, 2014

We're going to Denver!

Cameron and I just got the call that we will be going to Denver next week! We have our first appointments starting Monday, March 24th at 8:00am and are looking at surgery at the end of the week or the beginning of the following week! We are so thankful for all the prayer, love and support each one of you has shown us!

I'll post more information as it comes!

Much love, Cyrena

Sunday, March 16, 2014

A Little Good News!

Last Tuesday Cameron and I met with the Fetal Health team at Children's Mercy. We started the day off with a two hour ultrasound where they measured Clark's bones and tracked his movements! It was wonderful to see our little man! We also met with the Children's Mercy fetal surgeon, Dr. Iqbal, who showed us Clark's opening on his back and went over what the surgery would look like. Cameron and I got to meet all of the nurses, the anesthesiologist for the cesarean section, and our new high risk OB-GYN who will deliver Clark! They are such a wonderful, encouraging team and we are so lucky to be working with the best.

When we met with the OB-GYN, Dr. Jodicke, he had some news that we really were not expecting. Dr. Jodicke told us that the full results form the amniocentesis were finally in and there was a concern with Clark's Y chromosome. When the genetics team took a closer look at Clark's cells, they noticed that in half of his cells the Y chromosome was elongated. This means that there is extra 'material' attached to the end of his Y chromosome, but at the time they did not know if this extra material was just extra Y chromosome, which is not a health concern, or if it was material from a different chromosome, which would result in Clark having a syndrome. As you can imagine, this was quite shocking and we weren't really sure how to handle this information. We then met with a genetics counselor who educated us on how they run the test to see what this material was and that it could take until Friday to have the results.

After a long week of waiting, Friday rolled around! We talked to the genetics counselor and it turns out that the extra material on his Y chromosome is just extra Y chromosome, PRAISE GOD! We were so excited to hear this news! The fetal team sent the rest of our file to Colorado and we should hear Monday if they have made a decision and when we will fly out!

- We are so thankful that our little man has very strong legs and feet! It is a HUGE blessing that his legs are moving and we pray that they will continue to kick away!

- We are so blessed to have the Children's Mercy fetal team standing behind us and encouraging us throughout this whole process.

-We are so, so thankful that our little man's chromosomes are normal and that we don't have any health concerns regarding his genes!

-We are so very thankful that I will be able to come home a few weeks after the surgery! Usually, if you are having an in utero surgery, you have to stay in the city where you had the in utero surgery until you deliver but Children's Mercy has the ability to bring me home to recuperate and deliver Clark here!

-We continue to ask for prayer that we are accepted by the Colorado fetal team for the surgery.

-We ask for prayers that Clark's legs keep moving!

Much love, Cyrena

Friday, March 7, 2014

Spina Bifida Myelomeningocele Information

Here is a great example of what Spina Bifida Myelomeningocele is and how it affects our little guy. This picture also shows how the prenatal surgery will help decrease the chance of him having life long complications.


Here is a video that helps explain what the fetal surgery can do and how they perform it. We heard back from Children's Mercy and are meeting with the KC surgeons on Tuesday, March 11th to go over what to expect when we get to Denver. We still aren't 100% accepted for the surgery but everything is looking good so far. We continue to ask for prayer that we are accepted!

Thursday, March 6, 2014

MRI Results

The results from the MRI were not what we were hoping to hear. We are looking at the most severe case of Spina Bifida, meaning the spinal cord is exposed. Right now we are waiting to hear back from a doctor in Colorado who will tell us if the baby and I are accepted for prenatal surgery. We ask for prayer that we are accepted as this surgery would give our little man the best outcome we could pray for.

Monday, March 3, 2014

News From Our Ultrasound

Our hearts are heavy as Cameron and I found out that our sweet baby boy has Spina Bifida. We meet with Children's Mercy tomorrow for an MRI. This MRI will tell us the severity and location of his opening. We ask that you join us in covering our sweet boy in prayer.