She Got the Call Today

She got the call today

one out of the grey

and when the smoke cleared

it took her breath away

She said she didn't believe

it could happen to me

I guess we are all

just one phone call from our knees

It was an early morning start for me. I was tired and nervous. I was almost too tired to feel my nerves but I was so nervous that no level of exhaustion could quite wipe away the steely feeling my nerves left in my stomach, tightly knotted and leaving my stomach feeling a little queasy.
This pregnancy had left me quite worn out and the travel schedule with work didn't help the overwhelming waves of exhaustion that caused me to crash down onto my couch each evening as I listened to Cliff give Ethan a bath as I drifted off to sleep.

But this morning was a special morning and also one that left me quite anxious. I was traveling to the city to help lead a training class for new associates. I was insanely nervous at the idea of speaking in front of a group, but was equally passionate about the importance of this training and this created enough drive for me to try to push my nerves aside. This was my first time to help lead the training and I was not as familiar with the materials and the flow of the class as I would like but I was determined to do it with passion and enthusiasm.

The fun part of leading the training course was that it was themed to make it more enjoyable. The theme was Space and I got to pick from two costumes to wear upon my arrival. The options were Obi Won Kenobi and Princess Leia and with my ever growing belly, I quickly determined that the flowing white robe of the Princess would be the most comfortable route to go. I went to the bathroom and put on the over sized white robe over my clothes and adjusted the cinnamon roll wig on my head, making sure to secure the cinnamon buns over each ear with a bobby pin.
I went back to the conference room and helped to finish prepping the room and joked around with a few people that worked at the business office. Just before class was set to begin I looked at my phone which I had already put into silent mode and saw that I missed a call around 7:50 am. I thought that it seemed very odd and checked my voicemail to find a message from my OB/GYN. The message asked me to call him back as soon as I could. The nerves that were already present in my stomach began to flutter a little bit faster but I pushed that feeling aside and told myself he probably just wanted to discuss my next appointment. I called his office back and the nurse said he was in with a patient but he would call me back. No sooner was I headed back to the training room and my phone began to ring again.
I went quickly back to the little kitchen and paced nervously as the Dr began to explain to me that something came back out of the ordinary on the ultrasound image. Something was wrong with our baby. I sat down at the little round table in my princess leia costume with the white robes spilling around my dangling feet and the cinnamon bun wig itching my head and nervously took notes as he explained to me that our baby had stomach organs or intestines growing outside her stomach. I wrote down what he was telling me as accurately as I could, trying to spell out words like omphalocele and gastroshisis so I could look them up later. I was too shocked to asked questions and my doctor seemed to have prepped for this because he calmly explained that it was too early to know what we were dealing with and he had already set up an appointment with a specialist for me. I hung up with the Dr and sat at the table for a moment in a daze. I leaned my face into my hands to try to hold back the hot tears from my tired eyes but they spilled over and unto the sleeves of the princess leia tunic. I knew there was no way that I could stay at work and tried to put on a brave face so that I could face my co-workers and let them know I was leaving to go home.
I walked around the corner to tell the Admin that something was wrong and I had to go home and as I passed another smaller conference room one of the associates there caught my eye. After I quickly explained to the admin that something was wrong with the baby and I needed to go home and headed back down the same hall, the associate in the conference room stopped me. Even in my shocked state I knew that I did not want to be rude, even though I really didn't want to make small talk with anyone.
"Hey Micayla!" They exclaimed boisterously. "How are you?!" I tried to control my voice so that the emotions wouldn't spill forth. "Okay." I said making eye contact quickly and looking away. " Geez," He joked " You are acting like something bad happened or something." I was floored at this and didn't know what to say. I don't even remember my response or how I got to my car and made the hour drive home. I spent the rest of the day in shock and an immense sense of dread as I researched as much information online as I could.
I didn't understand how this could be happening to me, TO US. I cried out to God, prayers and questions swirling in my head as the helpless tears rolled down my check over and over. This would be the beginning of many many days and weeks and months of tears and I would soon learn what it would be like to have crying become a part of my daily routine- so much a part of it that I swore off makeup in the coming months rather than reapply it several times a day.

And so our difficult journey had begun- with one simple phone call- 3 years ago on this day. March 14, 2007

The start of a journey

Three years ago, on this date March 12 2007, it was a Monday. A sunny Monday and a hectic Monday at work. Cliff was taking half a day off from work at his job in the city because we were having a second level ultrasound for our second child. Somehow we managed to schedule the ultrasound for around 17 or 18 weeks which we found out later was about 2 or 3 weeks earlier than what is the norm. I am not sure how we managed to get into the ultrasound a few weeks early but given the prognosis we recieved a few days after the ultrasound I am glad that someone somewhere messed up on the scheduling. I like to look back and think that God had a hand in that mixup. I had received an ultrasound or 2 before this date, but they had been basic ultrasounds on the doctors old machine at his office. This was the official level 2 ultrasound that would tell us if we were having a boy or a girl!
I managed to leave the office just in time to make it over to the ultrasound room at the hospital and as I drove over there my mind was preoccupied with the thought that I really wanted to have a girl but I reminded myself over and again that I would love a boy too and not to be disappointed if that's what we were having.
The ultrasound technician was very pleasant and seemed very knowledgeable. She spent a long time looking at some of the images and said she just couldn't tell if it was a boy or a girl. She even called a colleague into the room to look at the ultrasound screen. They seemed to take a lot of images of the babies midsection and the ultrasound tech assured us it was because she had a hard time capturing it just right. I began to grow a little nervous but remained oblivious to any problems. I was so happy to see images of our child's face and foot which they printed out for us to keep. I left the ultrasound disappointed that we wouldn't know if we were going to have a boy or a girl for the rest of the pregnancy( unless we could talk the doctor into another ultrasound which I was already plotting in my head as we left) but very happy to see my little one. We would not receive the full ultrasound report for a few days yet, so our world remained worry free and well adjusted.
It seems ironic to me when I look back at the dates that we had Faith's level 2 ultrasound on March 12th and received the news of complications from the ultrasound report on March 14th- with National Trisomy 13 awareness day smack in the middle of those two days on March 13th. But I will share more about the day I received that call from the Dr on March 14th in a few days.
Today, I will just think about the moment that I first saw my daughters face(via ultrasound) and remained innocent to the knowledge of her difficult journey- our difficult journey- ahead.

crazy week and April rose update

Its going to be a crazy week for me and I am not sure if I will get time to update as I will be spending part of the week out of town for work.
But I did want to jump on very quickly to mention an update about the April Rose situation and mention a few points about it.
I want to thank those of you that emailed or reached out to me after my last post to ensure that I was in the loop on the situation and to see how I was taking that. Thank you. Your friendship, your concern, and your active participation in my life means a lot to me.
I have been following the story of April Rose and the latest findings in this scam. It has been upsetting to me at some turns but the truth of the matter is that 1.I am very relieved to find out that there is not really another baby with Trisomy 13 whose health conditions are so bad that she will die.I rejoice in life. Every moment and every breath of life is precious and to find out that there is NOT a baby whose life is cut so short... this brings me a giant sigh of relief.
2. I am thankful for the publicity for Trisomy 13 and hope that there will be more people educated about it and able in their lifetimes to be a support to someone who has or has had a child with it.( The publicity is thanks in part to an amazing friend of mine who sent an email request to Beccah to get her to direct support to our Trisomy 13 groups page http://www.livingwithtrisomy13.org/) ( which I am so proud of my friend for doing!)

And lastly, 3. I have been frustrated, angry, and slightly obsessed with the story as new updates came out. I am not going to try to wash over this last part by only mentioning the more positive first 2 points. I have been disappointed and at times depressed that someone could take a life experience that is so close to my own heart( and the hearts of many other moms) and exploit it in way that would draw attention to herself. But I will say that Beccah was/is an incredible writer and I would have followed her blog even if she had mentioned it was fiction.... maybe even more so. The things she wrote were things I myself could have thought at the time I was pregnant with Faith.

Hopefully I can update again soon, when I get back into town and settled in with my beautiful family.
I can't wait to update you all about our fabulous weekend trip to Muskogee and Tulsa Oklahoma!

Always,
Micayla

Its not my universe.

I think Caedmon's Call said it best: " Late at night I wonder, sometimes I wonder why?"
I really wonder sometimes why things happen the way they do... why some days go so smoothly, and bring joy, and others don't.
I wonder why some days nothing will phase me and I experience Joy all the way until I close my eyes to go to sleep.... and why some days are filled with tears and anguish and anxiety deep into the night.
I also wonder why some children grow up big and strong and some children never make it to be born... or why some are only with us 9 days or 32 minutes like my dear friend Tami's daughter Angeliyah.
I wonder why there is so much hate in the world( although I know the answer is the Devil, becuase I know that God is love) but I wonder sometimes why that is even allowed to exist and why some people turn to it so freely while others live their whole lives trying to be good.
Yesterday another trisomy Baby named April Rose was born. She wasnt expected to make it alive to birth, nor live much longer after and yet she is still alive and still hear. Her mom and dad are living minute by minute.... trying to get as much time as they can to know her and love her before her time to part this earth comes. April's mom has been keeping a blog to chronicle the difficult pregnancy ( which can be found in my bloglist) and now becuase of this they are recieving hate mail and even a mutilated first picture of April with devil horns drawn on the image.
This mommy and daddy are struggling through difficult moments- some of the hardest moments in life- and in the midst of that someone or several someones feel the need to try to hurt them and say and do terrible things. It angers me and it saddens me.

Today is three weeks to the day that I started to experience bleeding and my miscarriage began. Since the pregnancy was still very early, it shouldnt have taken my body too long to process things... but now it is three weeks later and I am still experiencing the miscarriage. It is a constant reminder to me all day long of the little baby that I won't get to hold in my arms. I wonder why it is taking so long?
Someone sent me a very thoughtful message today which said that now Faith would have a little brother or sister in heaven with her. This really helped to calm my heart... but it made me sad too..... I wonder why something so comforting can also make me cry.....
Ultimately, all these things going on compound the grief that I still carry around for my little red head. Most days, I am able to walk this earth without questioning, just accepting my course in life with hope for what tommorrow brings.
Today though, like some days, I wonder why things happen the way they do in this universe and I have to remind myself that it is not my universe.

This is God's universe and God does things his way. You may have a better way, but you don't have a universe. - J Vernon McGee

Happy Birthday Beautiful Girl!

Today is the 2nd birthday of my friend Tami Izzi's beautiful little girl Angeliyah.
Angeliyah was born prematurely on June 8 2007 and lived for 32 minutes all of which were spent held in her Mommy and Daddy's arms.
I am thinking of her and her family today as she celebrates her birthday in heaven. I know it has to be a Heavenly Celebration!!

Happy Heavenly Birthday Angeliyah!!!!!!



To read more about Angeliyah and her family, visit www.livingwithtrisomy13.org/memoriesofAngeliyah.htm or http://www.mtizzi.blogspot.com/

Her story is a courageous one.

Garden Day

Back in April on the saturday after Earth Day, we had the second annual Faith Constance Carlson Garden Work Day. Its taken me awhile to get images loaded up- what with Zed suffering from a Computer Coma( also known as Cliff trying to manslaughter the computer with a glass of water- perhaps that is Computerslaughter).
But Here are a few. This year we chose to do some things different. We had a butterfly release ceremony and we also painted garden stones. It felt a little more laid back for me.... but perhaps my emotions were not running quite as high as last year. I was emotional...... but not as emotionally overwelmed as last year.
We had a few repeat visitors, and some new visitors as well. We BBQ'd again and watched the kids play while we planted all the new flowers. Then we followed with the rock painting and finished off with the butterfly release and a short poem.
It really was a beautiful day. The sun was shining, the temperature was just right... and I feel like we did a bang up job in honoring our little girl.

" A Butterfly lights beside us like a sunbeam, and for a brief moment, it's glory and beauty belong to our world. But, then it flies on again, and although we wish it could have stayed, we feel belssed to have seen it."

The Waiting- Faith's Story Part III

Now that we knew about Faith's diagnosis, we began to pray and wait. And learn as much as we could. I joined a message board with other trisomy families. I studied and studied the stories of other children born with trisomy 13- looking for a link, a similarity, something.I tried to return to work as normal as possible. Somedays I would cry quietly at my desk. Or cry during my drive between stores. And Faith began to kick and move. In those moments I held her so tight. I would sit still as long as I could and talk to her, sing to her, and just feel her move. It was a dark time though. We knew there was a good chance that she could die in utero- stop growing. I could go into early labor- any day. I tried to remain hopeful everyday. I hoped and prayed for our little girl so ferverently!!!It was hard to stay upbeat though. Cliff and I were having difficult conversations I had never imagined I would ever have. Conversations about her care.. about what our life would be like..... and asking questions.... What if? What if Faith dies? What will we do?We cried everytime we entered these conversations... we could barely get the words out.... but we pushed forward and tried to prepare. I began to grow depressed. Faith's growth began to slow down and I was placed on bed rest. OH HOW DARK WERE THOSE DAYS. Suddenly my life grew very still. Ethan would still go to Aunt Serene's so I could rest during the day. I tried to sleep as much as I could. I was so lonely. I was used to being so busy. At work I would come in contact with many people everyday. I had very few visitors. I think I could count all the visits I had in that last month on one hand or two hands. I couldnt sleep at night...... I would stay awake until the early morning praying and quoting any bible verse or song I knew to pass the time. I cried rivers of tears. I was trying to stay strong but I didnt know how we could face this- how we could do this. I still don't. In the darkest moments I would sing out one song " Be thou my vision" I would sing it to Faith, sing out to God, and pray for strength, pray that my heart be focused on God alone. I wondered everyday so many times a day " will I meet my daughter?" "will I get to hold her while she is alive?" " will my daughter make it?" " can I give her the care she needs?" " Can I do this?" At night, when I couldnt sleep I would slip out of bed as soundlessly as possible so I didnt wake Cliff and I would slouch down the hall to the study. I cried out to God so many times as I sat in the dark in that room. I cried for Faith,I cried for Cliff and Ethan, I cried for strength, but most of all I cried that God's will be done and that I could accept that. My heartache was so strong it was physical. My heart literally ached inside my chest. I thought it could rip in two.Still I had moments of great faith. Moments that brought me peace. I know God gave me those moments of relief ALWAYS when I needed them most... always after I felt the most broken. I knew that God would hold us. That he would guide us as we walked this journey. That he was in control. And eventually the time came after all the waiting......... to deliver our baby girl....

The Specialist- Faith's Story Part II

We went to see the Specialist on March 26th. We had to wait 2 weeks from the initial call from Dr Smithton becuase the specialist didnt have any available appointments. I even called around to several other specialists to see if ANYONE could fit us in. After what seemed like an eternity, we went in on March 26th. Little would I know that this short 2 week wait would seem so very little compared to the waiting ahead. Cliff's parents came with us to the first appointment with the specialist and this started a trend. From this point on they were by our sides and at every appointment for the rest of the baby's life. We started the appointment with Dr. Elimian by having the best ultrasound ever. The technician was highly skilled and looked at every part of the baby. He confirmed that we were having a girl( although he also said it was hard to tell) and he showed us the giant "O"( this is what we began to refer to the Omphalocele as) Dr Elimian strongly encouraged an amnio becuase there was a 33% chance that our baby girl had a chromosome disorder. He did it right there on the the spot and they inserted a giant needle into my belly while he watched on ultrasound to make sure he didnt hit the baby. She did a funny thing as we watched the ultrasound. She swam over to where the needle had been inserted and put her hand up to the hole to feel for what had come in. I knew she was a smart little girl from the very start!Dr Elimian scheduled us for a follow up the day after Easter- 2 weeks away. We were told the amnio results could take 2 weeks to come back or they could be back sooner but we would go over them at the next appt. We went home with our hopes high and started another wait. I researched Omphalocele's as much as I could to prepare for the next visit and to decide on treatment for our baby girl. I learned that if she had chromosome problems she could have a severe type of trisomy such as trisomy 18 or 13. The majority of sites I visited assured that a baby that had this would be born severely mentally retarded and severely physically disabled. The sites said the baby would most likely die within a year. During this time Cliff asked if we could name our little girl Faith. "WE will need great faith to get through this" He said. I agreed. Our baby had a name.On the Friday before Easter I was off work. Ethan was staying with Mimi and Papa and I was beside myself wondering about Faith. It had been almost 2 weeks and the results werent in. I decided to call the genetics lab. They had to look around for her results and said they would call back. They called back a little while later. They told me Faith did test positive for a Trisomy. 13 but the cells were mosaic. Again I was in shock and didnt know what that meant. I wrote it all down. The genetic counselor asked what I was thinking? "How are you feeling? What are your questions" and talked in a very soothing and soft voice. I just repeated what he had told me about the test results and got off the phone. I got online to look up Mosaic Trisomy 13. I was shocked. I called Cliff crying at work and asked him to come home. He asked me why and I told him the initial results. He drove home in a wild state I am certain. We began to research Faith's condition. It was scary. As sites predicted mental retardation, possible miscarraige at anytime. Less than a month of life was projected outside the womb. We found one site that gave a ray of hope. www.livingwithtrisomy13.org There were children that were living with Trisomy 13. Children that went to school. Some children that danced and played sports. We printed off everything we had and decided to go home to Cliff's parents for Easter. We prepared as much data as we could to share with them. The drive to Elgin was long. The weekend was long. Everyone tried to remain in high spirits but it was difficult. I had to go off to myself several times to cry. I didnt know how we could make it. I didnt know how we could do it. I began to pray earnestly. Faith was now kicking and moving and with each Kick I held her so tightly in my stomach. "stay strong" I whispered. "I love you!"On Monday we went to the specialist with Cliff's parents. He went over the results with us and advised that we could still terminate the pregnancy. He said that due to her condition she was not going to be viable with life. I pulled out the papers from the website. I told him she could live. This was the closest I came to having an outright arguement with a medical professional. He left to have the nurse check my stats and came back in. He said he just wanted to be sure that we wanted to continue with the pregnancy considering the odds. That after 24 weeks we couldnt change our mind. Cliff and I reassured him that we would not be changing our minds. We will carry her as long as God allows!

Dr Appt 6/21/2007

We went to visit the Specialist again yesterday.Faith has grown about 6 oz. in two weeks. She is still slow growing, still at the 4 percentile. But her bio score was 8 of 8 which is as good as a baby can score.Along with the gestational diabetes, it is now suspected that I may have preeclampsia. ( you may remember that I developed this with Ethan and this was why he was born almost 2 weeks before his due date) My blood pressure is higher than it should be so I get to take the 24 hour jug test( this is where you collect urine for 24 hours YAY!) and blood tests on Monday to make sure everything is okay with my body. As long as my blood pressure stays under control and my blood sugar- then Faith will be delivered at 34 weeks. ( that is the very first week in July) currently I am 32 weeks and 2 days. We have another appt on Friday June 29th. If Faith's scores are not good or my blood sugar and blood pressure readings are not good, we will go ahead and deliver next week( week of June 25th). We know she will be here very soon and it is just a waiting and resting period for us. I am of course, still at home, trying to control my blood pressure and blood sugars.We were hoping she would not come so soon, but have known since early April that it was likely that she could come early due to growth restriction so this is not a surprise for us. We are ready to meet Faith and hopeful for her progress and recovery. We trust the Lord and His might works- and we rest in His strength.

DR Visit June 15 2007

So we are home from another round at the specialist. Faith gets to stay in another week and we go back on the 21st for the next ultrasound. It was a good visit overall. Good News *** 1.My blood sugar has for the most part been in normal range - and considering this is my first week to watch my diet- this is GREAT. Of course I am one of the few pregnant women out there to lose 3 pounds in a week.( not so good I guess but as long as the baby grows, its okay? I think I have only gained 10 or so pounds so far- but dont worry, I had lotsa extra to begin with #wink) 2. Faith's Biophysical profile was good. She scored an 8 and her cord blood flow has improved since last week. She is still very tiny, but has at least earned herself another week of staying tight in the womb... and we hope many weeks more. This all goes to show that the bedrest has really helped her well being as she is more active and her bloodflow better. This makes me feel a little bit better about being stuck at home and I am determined to get her lots of rest and growth!We will celebrate this weekend with a worry free Father's Day for Cliff. Cliff's parents are coming up to help him set up the Nursery and see Ethan. I will of course spend the weekend in bed or on the couch consuming too many hours of pointless tv programs and wishing that I didnt read through a book in a day. That is an expensive habit :) More to come next week! Stay tuned!

Change with Faith* update 6/8/2007*

Hi all,

Today was another appt with the specialist. We got the news that I DO have gestational diabetes. I get to check my blood glucose level 4 times a day and for now will get to control by diet. If I am successful at controling my glucose by diet I wont have to take pills or insulin shots. Thankfully, it was high but a lower high score. It should be 120 and it was 159. Faith is still kicking strong and has a good heart rate. However, she is still growing SO SLOWLY. She is now down to the 5 percentile. The Dr. talked with us about what happens next. If her growth continues to slow or stops she must come out to survive. He put me out on bedrest and it is our hope that we can carry her to 34 weeks at which time they may do the C-section. ( I am hoping for longer!) I am now at 30 and 1/2 weeks so this is close! I had to get a steroid injection to get her lungs developed early. They taught me how to give myself a shot which I did today and tommorrow I give myself a second round of steroid at home. This should be all for now. I was a big chicken about giving myself the shot and it was such a melodramatic preformance, I swear if the situation weren't so tense and upsetting I would have laughed at myself. Of course, as soon as I did it, I was so relieved I said " oh that was so easy" after the big fit I threw.( okay and if you know me well, you have seen me act SO tough but know I can be the BIGGEST BABY) Everyone in the room did laugh at this. Right now my Aunt is staying over an extra day for moral support and Cliff and I are sorting things out and making plans.We are VERY scared but know this is in the hands of God. Thanks for your continued prayers and support!

Valley of the Shadow of Death

I have been thinking for quite some time about Psalm 23. There are a few versions that I particularly like, which I have copied and pasted below. Many times in each of our life we experience loss, change, or as the new living translation puts it: our darkest hour. What is your valley of the shadow of death? Many of you may not be facing a darkest hour now,but have at some point in your life. It could be the loss of an ideal, poor health, divorce, loss of a loved one, loss of a job, financial woes, lonliness, depression etc. Do you feel you are all alone in the dark? Sometimes I have. Sometimes I have felt overwelmed, unable to sustain composure, scared to move forward. But each time I am given a little more strength, some little bits of comfort- and so I know that Jesus is right there with me, in the darkness, guiding me- and using this experience to bring honor to his name. It used to blow my mind that he can use even our darkest times to honor him. But in my recent experiences, I am beginning to understand. Sometimes it is in those darkest hours that we need to guide our faith back to him - it is those darkest hours that refine who we are, what is important,what we are living for.It is in those darkest hours that we can perform our greatest duties as the body of Christ- to love our brother- to help him bear his burden.I will give thanks to God for this darkest hour. THough I may not understand why I have been chosen to walk this path- I do know that I can glorify his name in this time. That this journey will honor his name- and he will be with me each step of the way. He can use this darkest hour to refine me, to undo who I think that I am, and to build me into who He wants me to be. This darkest hour will give me experience and understanding into things that will help me shoulder the burden for others who will also walk through this valley of the shadow of death. I may not be able to see the end of the journey, or how I will have the strength to make it there, but He will guide me and give me enough strength for each day.And I will rest in that.

Psalm 23 New Living Translation
1 The Lord is my shepherd;
I have all that I need.
2 He lets me rest in green meadows;
he leads me beside peaceful streams.
3 He renews my strength.
He guides me along right paths,
bringing honor to his name.
4 Even when I walk
through the darkest valley,[a]
I will not be afraid,
for you are close beside me.
Your rod and your staff
protect and comfort me.

A psalm of David. From Psalm 23 New International Version
1 The LORD is my shepherd, I shall not be in want.
2 He makes me lie down in green pastures,
he leads me beside quiet waters,
3 he restores my soul.
He guides me in paths of righteousness
for his name's sake.
4 Even though I walk
through the valley of the shadow of death, [a]
I will fear no evil,
for you are with me;
your rod and your staff,
they comfort me.

Faith Update 5/28/2007

All,
Friday we had ANOTHER appt with the specialist to check on Faith. The appointment went well and Faith was moving and kicking for all to see on the Ultrasound. Cliff asked if we could have a 4D ultrasound and they were so kind as to make time to give us one( and on a Friday afternoon before Memorial weekend!) I have enclosed the pictures of her- which are just precious. Doesn't she look just like Cliff?Her growth is slow, she is now in the 8th percentile, she gained about 6 oz only since the last appt. She is a very little one but still fighting and thriving.She is about 1 pound and 8 oz. Her omphalocele is bigger, about 15 cm in diameter. STILL NO DEFECTS DETECTED WITH HER HEART! We celebrate each small step!The doctor has moved me to restricted travel. Which is, not to travel unless neccessary- although he stated that I can travel some for work- just not as much. This may eventually progress to no travel. He said that with Faith's size and growth retardation they would typically send a mom home to do bedrest- but he doesnt want me just sitting at home thinking about the baby and worrying about her condition so it is okay to work as long as I am taking care of myself. We have such an excellent Doctor! He is so kind and attentive. It felt like this appt really turned everything around as far as how I feel about the Dr and hospitals. I really trust that we are in good hands.He told us at the last visit that we could come to appt.'s every 3 weeks but this time he said we will come now every 2 weeks. I think this is becuase of her slow growth but he was careful to point out that every 2 weeks for a visit at this stage of pregnancy is normal. We got to tour the hospital with a wonderful representative from OU Medical. She took us to the birthing rooms, the recovery area, and even took us into the NICU to see what everything is like. The NICU is of course huge and has many rooms with only 2 babies to a room. Gone are the old days of all the babies in one large room. There is also a special area for parents that are preparing to take their special needs children home. In this area they have a room where the parents stay with their baby and the nurses there teach them how to care for the babies. They will also have a social worker that will be working with us after Faith is born and will help us with any decisions or planning that we will need to make. We will be in good hands at OU Medical.
So that is the newest update! We are pushing forward each day and hoping for the best for our little Faith! Love ,
Micayla

Update

Just an update on baby Faith. She has been kicking away and very active. I am enjoying all those little kicks and moments with her. My health has still been good. I am not experiencing as many issues with my sciatic nerves(yay) and feeling pretty good. We had another ultrasound and echocardiogram about a week ago. Thus far, they havent found anything wrong with Faith's heart.. This is significant as 80% of trisomy 13 babies have heart conditions or complications. They will continue to monitor it as she grows as well as after her birth. All of her other signs have been good except that the omphalocele is now 13 cm in diameter. 5 cm is considered giant so I have no idea what 13 cm would be called.
We did see on the ultrasound that Faith is already practicing her breathing to prepare for being out of the womb. So all in all, a good visit. We were reminded again of the Doctors earlier prognosis. That her condition is not compatible with life.I failed my first glucose screening and had a second longer glucose screening yesterday which I think I also failed( will find out next week) I guess I may be going on a restricted diet and exercise to control my blood sugar( but eating healthy is not a bad thing right?) We are fighting to stay hopeful and just trying to enjoy each moment we have with Faith. Some days are really hard for us but all in all we are doing good and pushing forward. I remind myself all the time that Faith was created by God before I even knew she was there. He formed her body completely, her heart and her mind. For the length of times that I have her, what a blessing! We have been entrusted as her parents to love and care for her everyday and we are going to do the best we can!

Faith's Page

http://www.livingwithtrisomy13.org/AlbumFaith.htm

Above is the link to Faith's page.

News

We recieved the result of the amnio this morning. The news is very devastating.Faith has Mosaic Trisomy 13- a chromosonal abnormality.
You can learn more about it at www.livingwithtrisomy13.org
This was the most optimistic, hopeful site we found on the web. Many sites are much more discouraging of the diagnosis.We are working through this step by step and again, sincerely appreciate your support, prayers, and kind words.