Stem cell infusion

When we first recieved the news that our baby had fluid on her brain and it is called Hydrocephalus, I had never heard of it. I went crazy researching and learning more about it. That is when I came across a webpage about a little boy named Owen that was born with severe hydrocephalus. I read his story and learned that Duke University hospital performed a cord blood infusion on him, in hopes the stem cells would help repair some of the damage the pressure of the fluid had on his brain. There is no way to know for sure if this procedure makes a difference, but if there's a chance it could then we felt we were crazy to not do it. So Mike and I contacted Duke so Cayman could have this stem cell infusion too. It was not until all the chromosome and gene analysis from the amnio came back could it be decided if her stem cell infusion could be of help. If she had a defect in her chromosomes or genes I guess her own stem cells would not have been able help to her. But receiving the news that everything was normal we called Duke again and just this past week we recieved in the mail the cord blood collection kit. It was very exciting! I guess when you are a high risk pregnancy you take delight in whatever you can. So we'll take the kit with us the day of the C-section. After she is born they will collect the blood from her umbilical cord, and it will be sent to Duke and preserved there until Cayman is strong enough to make the trip to North Carolina. Owen's webpage about this Cord Blood Therapy explains this procedure much better than I can.

another change of look

Finally, I have found a background that I like!

I talked to the doctor's office yesterday. For 4 days now I have been in extreme discomfort to the point it is very difficult to walk. I knew it wasn't contractions but I didn't know if it was something else that I should be alarmed about. And since it was not getting any better I called one of the high risk pregnancy nurses. Cayman's head is completely down now, and she said it is very typical at this stage of the pregnancy for things to become more uncomfortable. And since my baby's head is enlarged it is probably putting more strain on the ligaments and muslces. She assured me that the baby's head is still protected by the amniotic fluid, so even though I feel a lot of pain and discomfort the baby's head is not under anymore extra pressure because of her downward placement in the womb. She told me that I should take it easy and not be doing anything extra. She said this is not one of those situation where you can "walk it off". By being more active would probably only aggravate it more. One good thing that has come from this is I feel less nervous for my C-section. It makes me even more ready to get her foot out of my ribs, and the pressure off my lower abdomen. Something else new that just started for me is heartburn...not fun! Especially since antiacids gross me out!

So here's a picture of Uncle Tyson (a.k.a. my brother). No he's not passed out drunk. He had his wisdom teeth out.

Cayman's first photos

High Risk Pregnancy means lots of ultrasound pictures!

She seems to always have a hand or a foot in her face. The one at 24 weeks is her laying on her back, with her leg entirely extended, with her toes in her face. Oh to be that flexible!

An incredible true story

My mom sent me this story. The timing of it was perfect for I was needing a refresher on my faith.

A cold March wind danced around the dead of night in Dallas as the doctor walked into the small hospital room of Diana Blessing. She was still groggy from surgery. Her husband, David, held her hand as they braced themselves for the latest news.

That afternoon of March 10, 1991, complications had forced Diana, only 24-weeks pregnant, to undergo an emergency C-section to deliver the couple's new daughter, Dana Lu Blessing. At 12 inches long and weighing only one pound nine ounces, they already knew she was perilously premature. Still, the doctor's soft words dropped like bombs. "I don't think she's going to make it," he said, as kindly as he could. "There's only a 10-percent chance she will live through the night, and even then, if by some slim chance she does make it, her future could be a very cruel one."

Numb with disbelief, David and Diana listened as the doctor described the devastating problems Dana would likely face if she survived. She would never walk, she would never talk, she would probably be blind, and she would certainly be prone to other catastrophic conditions from cerebral palsy to complete mental retardation, and on and on.

"No! No!" was all Diana could say. She and David, with their 5-year-old son Dustin, had long dreamed of the day they would have a daughter to become a family of four. Now, within a matter of hours, that dream was slipping away.

Through the dark hour of morning Dana held onto life by the thinnest thread. Diana slipped in and out of drugged sleep, growing more and more determined that their tiny daughter would live - and live to be a healthy, happy young girl. But David, fully awake and listening to additional dire details of their daughter's chances of ever leaving the hospital alive, much less healthy, knew he must confront his wife with the inevitable.

David walked in and said that we needed to talk about making funeral arrangements. Diana remembers "I felt so bad for him because he was doing everything, trying to include me in what was going on, but I just wouldn't listen, I couldn't listen. I said "No, that is not going to happen, no way! I don't care what the doctors say, Dana is not going to die! One day she will be just fine and she will be coming home with us!"

As if willed to live by Diana's determination, Dana clung to life hour after hour, with the help of every medical machine and marvel her miniature body could endure. But as those first days passed, a new agony set in for David and Diana. Because Dana's underdeveloped nervous system was essentially 'raw,' the lightest kiss or caress only intensified her discomfort, so they couldn't even cradle their tiny baby girl against their chest to offer the strength of their love. All they could do, as Dana struggled alone beneath the ultraviolet light in the tangle of tubes and wires, was to pray that God would stay close to their precious little girl.

There was never a moment when Dana suddenly grew stronger. But as the weeks went by, she did slowly gain an ounce of weight here and an ounce of strength there.

At last, when Dana turned two months old, her parents were able to hold her in their arms for the very first time. And two months later, though doctors continued to gently but grimly warn that her chances of surviving, much less living any kind of normal life, were next to zero, Dana went home from the hospital, just as her mother had predicted.

Five years later, when Dana was a petite but feisty young girl with glittering gray eyes and an unquenchable zest for life. She showed no signs whatsoever of any mental or physical impairment. Simply, she was everything a little girl can be and more. But that happy ending is far from the end of her story.

One blistering afternoon in the summer of 1996 near her home in Irving, Texas, Dana was sitting in her mother's lap in the bleachers of a local ballpark where her brother Dustin's baseball team was practicing. As always, Dana was chattering nonstop with her mother and several other adults sitting nearby when she suddenly fell silent. Hugging her arms across her chest, little Dana asked, "Do you smell that?" Smelling the air and detecting the approach of a thunderstorm, Diana replied, "Yes, it smells like rain." Dana closed her eyes and again asked, "Do you smell that?" Once again, her mother replied, "Yes, I think we're about to get wet. It smells like rain." Still caught in the moment, Dana shook her head, patted her thin shoulders with her small hands and loudly announced, "No, it smells like Him. It smells like God when you lay your head on His chest."

Tears blurred Diana's eyes as Dana happily hopped down to play with the other children. Before the rains came, her daughter's words confirmed what Diana and all the members of the extended Blessing family had known, at least in their hearts, all along. During those long days and nights of her first two months of life, when her nerves were too sensitive for them to touch her, God was holding Dana on His chest and it is His loving scent that she remembers so well.

When you are down to nothing ... God is up to something!

This story is amazing to me. I couldn't read it to Mike without crying. It's incredible how that little girl seemed to remember and identify God, but that was not the part that was the most striking to me. It's this:

There was never a moment when Dana suddenly grew stronger.

A miracle is not always something that happens all at once, but sometimes ounce by ounce. Yeah I have faith God could have made Dana strong suddenly and not little by little. I have faith he could fix Cayman and she wouldn't need a single surgery or therapy to help her development. But that's not how He always works. I believe He could have created all of the earth in an instant moment, but instead He chose to do it over a week. Faith is trusting that every outcome is always to your advantage. You just might not know it until later.

8 months pregnant

I haven't been full of many thoughts lately. Well, I suppose that's not true. I'm always full of thoughts. Rarely does my mind shut off. I guess I have not been allowing myself to concentrate on what's on my mind. I started feeling very overwhelmed by everything that is coming up. There's so much to do and plan when having a baby and even more with a baby that will need extra care. Oh how badly I wish this was a normal pregnancy and I would be bringing my baby girl home in just a few days after she's born. So even though there's nothing paticular I have on my mind I want to share, I thought I'd post a few pictures.

Yep, you guessed it...another hat I knitted for Cayman

My T-shirt reads:

WARNING: Contents of this shirt are extremely unstable. Any irritation or aggravation may be hazardous to your health.

Cayman's coming soon

22 days until Cayman is born!!! It's going to be here quick, especially with having so much to do between now and then!!! I've never been so nervous for anything in my life like I am for Cayman's birth. I want to be there for and with Cayman as much as I can be, and she will likely not be able to come to my hospital room, so I will need to be strong enough to go to her in the NICU. Then when I'm discharged from the hospital it will be of a challenge I'm sure. I will no longer have my own room with a bed in it to go back and rest, but I know I won't want to leave the hospital to go back to the hotel or Ronald McDonald house to rest. I don't even know how to prepare for how hard its going to be to suddenly have Cayman not with me wherever I go. I pray so hard my baby recovers so well from her 2 surgeries, and she has no problems learning to eat, and will be out of the hospital and at home with us within 2 weeks! It's going to be so great to hold her and see her for ourselves, not just through ultrasound pictures. We'll be able to take our own pictures of her. When I was making our hospital packing list the digital camera charger was at the top of the list. I'm sure the camera will be on constantly!! I've had a dream that when Cayman was being born I had forgotten to charge the camera batteries and we didn't get any pictures! That would be a nightmare!

Before Cayman's born...

Things I want to do before Cayman is born:

• get a Preggo Massage
• get my hair cut
• have a baby shower
• visit my ex-cat Lucy...whom was adopted to a very good home
• move all Cayman's stuff over to my in-laws (where we're living) from my parents' house.
• sell our house in Indiana
• get our taxes done

more hats for Cayman

Over the last week I've finished 3 more hats for Cayman. It's helping to keep me busy while I can't do much else. And since I don't have a nursery for her right now, it's keeping my nesting urge satisfied.

With this one I can change the ribbon so that it coordinates with her outfit!

Doctor appts

Yesterday we had another day spent at what I'm afraid will become our "home away from home"....the U of M hospital. We met with one of the OB doctors, and went over all the C-section paperwork, so we have that out of the way. As long as Cayman stays in the head down position they will perform the "bikini cut" incision which would allow me to have vaginal births in the future, IF I ever do this again (that topic is still undecided). We were given a tour of the birthing center. We saw the recovery room, which is where I'll start out before the C-section and return to after the C-section, then the regular rooms that I'll be moved to after the recovery room, and the Neonatal Intensive Care Unit (NICU) where Cayman will be. Mike and I will have almost unlimited access into this room any time so we can be with our baby. There is a window to this nursery so we could look in and see it. There were a few babies in there now and seeing them with all their tubes and bandages didn't actually upset me...it made me more anxious for Cayman to be here!! It confirmed to me my feelings I've written about previously, that I would choose to find out about Cayman's diagnoses before she was born and having the experience of surgeries and being in the hospial myself makes me less freaked about such things. Please don't misunderstand what I'm saying....I'm not casual at all about this whole experience! I think and worry about it all the time. And of course I've never had my own child and I'm sure it will be so much harder to see Cayman laying there with her tubes and bandages. I feel for Mike so, as it's very emotional for him to be a bystander to both his wife and daughter undergoing surgery.

After our tour of the birthing center we met with the Anaestheologist. They discussed my spinal fusion I have. It's high enough that they will be able to put in an an epidural catheter or a spinal block. They won't know which one of these to use until they know what kind of incision will be made. If Cayman stays head down and they do their cutting very low, they will probably use the spinal block. If she decides to be breech they will have to make a higher cut in the abdomen which gets more into the area of a previous surgery of mine. Sometimes this can leave a lot of scar tissue in there and it takes longer to cut through, which is why they would use the epidural catheter so they could keep administering the medicine. Hopefully Cayman stays head down...that would be the best. If by chance there is a lot of scar tissue in my spinal column and it is not letting the medicine circulate properly they will use general anesthesia. Although it sounds nice to be put completely out, as I can't imagine how weird it's going to be to know my abdomen is wide open and I'm laying there awake, but it would mean I would miss Cayman's birth.

That was the end of our day in Ann Arbor. We return in 2 weeks for another ultrasound, a clinical appt, consultation with the neonatologist, and with the pediatric surgeon. What did I say? Our "home away from home".

So onto more of the fun parts. I'm 35 weeks pregnant now. They checked Cayman's heartrate. It was in the 150's. It's always so much fun to hear my baby's heartbeat!! It's less than 4 weeks now til she's born! If everything is looking good at our next appointment in 2 weeks, that may be our last appointment there before she is born. There is an end in sight to this pregnancy!!

Story time:

Yesterday morning when we were getting ready to leave for my appointments. Mike was super tired as he's having a bit of an adjustment with nights and days. So he was a bit cranky. He wanted to wear his Ohio State hooded sweatshirt. Our very first appointment in Ann Arbor, he did wear it and his Buckeye hat, and we recieved way more attention than desired! Since then I allow him to wear only his Buckeye hat but nothing else with Ohio State on it. He asked me very politely if I cared that he wore his Buckeye hood. I told him I did and asked him to put on something else. He gave out a very annoyed sigh and went back into to the room to change. When he came out with something else on I thanked him, and his response was "Yeah, well I'm not very happy that I can't just be comfortable today". As he's saying this I am sitting down in the chair to rest my hurting back and my slightly swollen feet. I felt a pregnancy mood swing starting to rise and I wanted to say "Shut up!!" But I was nice!

Cayman's first flowers!

Cayman got flowers!!! Our sweet friends, Nick & Val sent us these beautiful flowers. Since we no longer have our cat, Lucy, I don't have to worry about trying to keep them hidden from her. She loved to eat these kinds of things.

Madison loving on Cayman

I had to share this picture of Madison (my little sister...yes she's adopted) loving on Cayman. It's so sweet. She often pats my belly and says "Hi Cayman". For being 3 years old she seems to understand well that there's a baby in my belly and soon she's going to come out.

Cute story that happened when I was sick in the first trimester..... Madison wasn't feeling well one day. She was holding her tummy. When I asked her what was wrong, she told me she had a baby in her tummy. She thought whenever ya puked and your belly hurt it was because there's a baby in there.

I knitted Cayman another hat last night. I had all good intentions of going to bed at a decent hour even though mike was working. In fact I was heading into bed when I spotted it...a big black spider!! Not a good thing for me!! I did get the courage to kill the thing but I was so freaked out I couldn't sleep. So because of that this hat was made!

I'm not skilled to understand

I finished Cayman's green hat already. Instead of going to bed last night I stayed up and worked on it. Mike's working his night shift on the weekends now. It's not so bad. He works 12 hour shifts on Friday, Saturday, and Sunday nights. Then he has the weekdays off. We actually have a lot more time together with this schedule. And then on the weekends I'm with my family or his. I feel a lot less lonely than I did when we were in Chesterton. However, I have become very undisciplined at getting to bed at a decent hour with Mike gone at night. But I figure, what's the point on having a schedule when Cayman is going to come and change it anyways. She is getting so big! My stomach is really starting to stretch and feel uncomfortable. I'm not sure if it's a foot or something else that she has lodged up under my right rib cage, and now my ribs on that side are very sore.

We have discovered in this journey of ours, it's left us all very speechless at times, including our families, friends, and the community. It's been meantioned to me that many people have been thinking about us but don't know what to say. I totally understand this response. There really isn't much to say. I've listened to Aaron Shust's song "My Savior My God" a lot.

I am not skilled to understand
What God has willed, what God has planned
I only know at His right hand
Stands one who is my Savior

I thought I would share what we love hearing from people....

• they are praying for Cayman and us
• they are so excited to meet her
• She is gonna be the sweetest and a little miracle no matter what
• She's a strong little person to have made it this far
• what a blessing she is
• they understand it's been a difficult time, but yet we still look forward to having her
• We're going to be awesome parents

We love hearing that our baby girl is going to be loved and accepted, and people are excited for us to be having a baby. It's still ok to congratulate someone even if their baby is born with a birth defect. I know every baby is a miracle...and maybe I'm biased but I feel Cayman is even more of a miracle because when I think of all the things that have went wrong in the growth of her tiny body and yet she is still living and striving I am amazed. And even at our darkest moment, which was after our first appointment in Ann Arbor when her list of anomalies grew to a great length, I said to Mike "God's not done yet". And I still feel that. I can't help but wonder, did she have a heart defect and God made it better? Was this baby really expected not to live and now it looks more promising because of God? I really am not skilled to understand what God has willed, what God has planned.

A Change of Look

I noticed that Cayman's site was looking a bit dreary with the all black background, so I had to change it! I didn't want it to give the impression that this is a dark time for us. True it is scary with all her birth defects, but we still feel so blessed to have our baby. We still have that first-time-parent excitement of "can you believe she's ours?!"

I finally finished Cayman's hat I was knitting. I'm not sure why it took me so long. Normally I can knit these things up so quickly. I blaim it on being pregnant...I'm slow at everything! I didn't get purple yarn like I said I was going to. But I was given a bright spring green cotton yarn that I'm going to start her next hat with instead.

Random thoughts..

I had a dream last night about my C-section. Cayman was born, I heard her cry, and I wanted to see her and I didn't think they were bringing her over to me quick enough. So I sat up to look at my baby and all my insides fell out. Yeah, a bit weird...and gross.

Mike and I have been reorganizing our space so we have room for Cayman and her stuff. Which is totally exciting. It feels a bit cramped not having our own place but it's going to work out well. I will be glad when I will have a real nursery for her. It's that nesting urge...totally a woman thing I think. But for now I'm feeling excited! Definitely very nervous. It's a different kind of nervous than if she was going to be born without any birth defects. I don't know what to expect, and I hope for the best, and really, I don't even know what that is right now. I just want to hold my baby, love on her.

My belly is really starting to get big. Ok, those of you that have seen me and don't think I look that huge, don't laugh...I really do feel big!! And I'm feeling the stretch on my stomach muscles, and it's quite uncomfortable, not to meantion very tired back muscles. Mom got me one of those pregnancy belly belts thinking the extra support would help my back. I put it on and was amazed how much better my lower back felt. HOWEVER, Cayman decided she didnt' like it. She started pushing against the pressure of the belt so hard I was even more uncomfortable that I had to take it off. She's very territorial. Even in the first trimester, just wearing elastic pants would make me feel sick. As you can imagine, it's been very interesting trying to be comfortable in maternity clothes since almost everything has an elastic waistband.

Speaking of my belly. Mom got me some Cocoa butter lotion for my skin. I love it!! It's formulated so it's healthy and natural for your skin. For all my pregnant friends out there, I highly recommend it. I'm almost 8 months pregnant and I didn't get any stretch marks....not yet anyways. I have a consultant in the area that sells it. If you're interested in her information, let me know. That's all my random thoughts....for now.

knitting

I'm knitting Cayman a hat. Hats are my favorite to knit, next to scarves. They're easy, they're fun, and functional. After I get done with this one I want to knit her a purple hat. I have lots of cute purple clothes for her but no purple hats to match. I guess I gotta go shopping for some purple yarn because ya know a knitter never has enough yarn.

Yesterday my mom and I washed all Cayman's clothes and I folded them and put them away in her dresser. It was so much fun! Mike thinks we have way too many clothes for her, but this is also coming from the guy that thought it would take only 20 boxes to pack up our entire apartment when we moved from Columbus, OH to Chesterton, IN.

Liz, our Clinical Care Coordinator, at U of M called today to schedule the date for my C-section. It's Tuesday March 18th. I'm actually so excited! We now know the day when we get to hold Cayman! Unless she decides to be ornery and come earlier than that. I really hope she stays put until the 18th otherwise we've been told to go to Toledo hospital, deliver her there, and they'll transport her to Ann Arbor after that. I'm not sure, but I think I would have to stay at Toledo while I recover. That would be tough!! That would be tough on Mike too, to have Cayman and me in two separate locations! So hopefully that doesn't happen.

It's Valentine's day so I need to get myself around to go out with my husband! He asked me where I wanted to eat. My first pick would be to eat at Wolfgang Puck's restaurant, Spago in Beverly Hills...but since we can't do that we're going to Pizza Hut :o).

Not always so postive

Sometimes, somedays, it's really difficult for me to stay positive that everything is going to be alright. It seems so relative. Mike will say to me "It's ok, everything is going to be alright". But what does that mean? Most of the time we are at a lost to answer that question. At one time "alright" meant we were going to go back to one of the appointments and find that all the extra fluid in her head was gone and her brain looks healthy. But as we've watched it progress from moderate to severe levels as well as the findings of other birth defects it changed to "if only our baby girl lives everything will be alright". I do feel more confident that she will live, and I am glad about that. Presently, "alright" means to me that her limitations and handicaps would be in a mild category. I think Cayman has an amazing strong will and will surprise us all.

In the beginning when the Hydrocephalus was discovered, we were asked if we would terminate the pregnancy. It wasn't even something we had to think about, it was an automatic "No". But as we began to learn how serious Cayman's condition could be a very strange guilt came over me. Had we made a decision to inflict our daughter with years of handicap, pain and suffering? But yet it's not my choice to give or take away life. God had given this baby life, who was I to say that she shouldn't live? I felt like I was playing god if I made that decision to end our daughter's life. So I did what I have learned in life to do with guilt...pass it over to God and replace it with a different thought, a better thought. In this situation I replaced it with the thought that God and Cayman are in control here. They decide how well she does. I have much more faith in God and in Cayman's strong will than I do myself anyways. I have been so extremely exhausted living with all the unknowns.

However I feel like I am a priviledged bystander in this potential miracle. Like, I get the best seat in the theater to watch God work in Cayman. I get to help her, to love and support her.

Perhaps God has a bigger plan than I had for myself as a mother.

Maybe my dream isn't crushed, maybe just a little altered.

A few wishes

Just a few thoughts before I head to bed.

Things I wish for Cayman...

• I wish for her to know we love her unconditionally
• I want her to know how incredibly proud of her we are
• I want her to know she can accomplish great things
• I wish no one would ever hurt her
• I want everyone to love and accept her
• I don't want her to ever feel different

Things I have learned...

• I have learned far more medical things than I ever cared to know
• I have learned I'm stronger than I thought
• I have learned that life is exactly what it is...life.
• I have learned to not try to figure life out, but rather figure out how to live life with what it throws at ya.
• I have learned that people can be very compassionate but can also say some unintentionally stupid things
• I have learned I can have peace even in the mist of turmoil
• I have learned my faith in God is real, not just something I hold onto only when life is good

The beginning

The purpose of this site is to record my thoughts. I have lots of thoughts. Some happy, some sad. I hope to better express myself through my blogs than I do in person. Words don't come to me very quickly these days. We think in emotions, and emotions are not words. So it takes me awhile to process my thoughts. Often times I want to tell people how I'm feeling but I don't always know how to. So I'm hoping this blog can fill in some of the gaps my silence creates. I also hope by sharing our story it may help someone else.

Here it is, how it all started...I became pregnant in July of 2007. It had been 14 months hoping for a baby so it was extreme joy when we discovered I was finally pregnant. Other than being extremely nauseous in the first trimester and in the hospital once for dehydration I had no thoughts that anything was wrong with my baby. In fact, I was so confident of it I had decided not to do the triple screen test. Then at 20 weeks pregnant we had a routine ultrasound. Our biggest concern going into the ultrasound was that our baby would not be in a position to find out it's gender. I still never really thought anything was wrong. We did find out it is a girl! We already had her name picked out...Cayman Cindy. The next day the doctor's office called telling us the report from the ultrasound showed our baby has one kidney. We met with the doctor the next day and learned there was more to the devestating report. She also has Hydrocephalus, an accumulation of extra fluid in her head compressing her brain as well as something wrong with her stomach. My visits with my OBGYN instantly ended as we were transfered to a specialist in the high risk pregnancy department. From then on everything has been so different. My dream world was crushed. The doctor ordered blood work to be done to test for any of the dangerous infections that can cause birth defects. It all came back negative. If things weren't stressful enough, my husband was offered a job back near our hometown (2 1/2 hours from where we were living), and we decided to accept since it would be helpful to have our families close during this time. So at 25 weeks pregnant we put our house up for sale, moved in with my husband's parents, and had my care transferred to the nearest specialist which is at U of M in Ann Arbor, Michigan. Requiring a level III pediatric facility usually means having to travel unless you live in a major city. So for us Ann Arbor is about a 2 hour drive. Our first visit there turned up very grim news. Cayman's fluid in her head increased a lot without her head growing bigger (meaning her brain was either not developing or it was severly compressed), a stomach condition called Duodenal Atresia which would need surgery after she's born, and a heart defect. All that together was concerning for a reduced likelihood of survival post-natally. At that moment I prepared for the death of our daughter. If she would be so severely compromised what was the point of life in the first place. I didn't know what made me cry harder...thinking she would die or thinking she wouldn't have quality of life. It was bad vs. worse but yet I didn't know which one was worse. I cried everyday, all day. The day before we met with the Cardiologist, I told Cayman "Your Mommy and Daddy are so proud of you. You have fought so hard to be alive with all the things going wrong in your precious body. If you're tired and you want to go home to Heaven we'll be ok. We love you so much and we'll still be so proud of our little girl". It is still painful to think of that time when I said that to Cayman. But after I said it, the room became so peaceful and I stopped crying. My little girl wants to live!! I could feel that!! I can't explain it, it was just something I could feel. So I told her "Your Mommy and Daddy will fight with you until you tell us you've had enough". The next day we met with the Cardiologist and received the breath-taking news that her heart was functioning beautifully! Suddenly Cayman's future seemed brighter! Perhaps our prayers were being answered! We decided to do an amniocentesis at 29 weeks. We were seeking answers to her birth defects. The Genetic Counselor called one afternoon saying the chromosome analysis was back and it produced normal. I called Mike at work to give him the news. His response was "this is good news right?" I knew exactly what he meant. It was good to know her chromosomes were normal, but yet it still didn't help us know what we are dealing with. It didn't seem to make any sense that there could be several birth defects without any known reason. Another test from the amnio was done called a Microarray. It analyzes the information contained within the genes. It too produced normal results. Even though we did celebrate the news it still felt very disturbing to have so much unknown to us. I am now 33 weeks pregnant. My baby girl's head measures the size of a full term baby. Because of this a planned C-section will be done. I am so excited to hold her. If Cayman's story of her life has to be like this, I would choose to find out like we have, rather than go through the whole pregnancy and find out at her birth. Sure, I have been robbed of some of the joys of pregnancy. Most of my pregnancy has been filled with stress and fear. But having the chance to deal with all this before she is born has helped me be ready to bond with my little girl and be there for her when she needs me the most...and that is the most important thing to me. When I was 12 years old I was in an auto accident that put me in the hospital for a month and after that a lengthy recovery. I feel, having that experience, will make me a better mom for Cayman. I don't freak out by hospital stuff easily, I can understand and am more knowledgeable because of my experience. And even having compromised leg muscle strength, which has prevented me from doing some things in life, I am very much content, peaceful, and happy. And I think that if Cayman is compromised I can better help her to be content, peaceful, and happy in life too because it's a path I know. I love my little girl!! Soon we will get to hold her!! What a beautiful day that will be!

Wow, I didn't realize once I started telling our story it would just keep coming. I am sure future postings won't be so long.