A day in the Life of Claire

This spot is dedicated to the preparation and life of Claire Cox. Claire has been diagnosed with Trisomy 18, which is a genetic disease caused by an extra chromosome at the 18th spot. We know that God can cure Claire at any time, and continue to pray for this; however we also know that His Will, will be done!

Monday, October 30, 2006

Well, it was not a very good weekend around the Cox household this past weekend. You see, Claire's little friend from Arkansas, Eliot, passed away. Eliot lived to be just over 3 months old, which is longer than usual for many Trisomy-18 babies. This really made us realize just how precious each & every day is with Claire (heck, each hour).

Claire seems to be having more & more difficult times breathing, and it seems to last longer than before, she also seems to cry more than she use to (although it is still not very often, or very loud).

We want to thank you all for celebrating LIFE with us, and we hope you will appreciate one another just a little bit more today.

Thursday, October 26, 2006

Look ya'll, MINI ME!

This is the FABULOUS Kangaroo Pouch that our friend Alex made and it has been Mommy & Claire's favorite time together...
Mini me (x2)! Both look like their Papa.....

Just a few runner up pumpins

The winning pumpkin!

Tammy in her halloween spider hat!
On Tuesday, we had Claire's 21st birth(day). We had some of our friends and family over to not only show off Claire, but also to celebrate her life. Along with her celebration, we also decided to have a pumpkin carving contest. I can't speak for anyone else, but for Tammy & I, we had a blast. It was great to see people we had not been able to see for a while, and wonderful to "try" to act regular, or normal, even if it was just for a few hours. We had nurse Sherri on hand to help with the little angel. Thanks to all who came by, as it was great for us. We also apologize to many who we just could not invite, but would have loved too.

Claire has grown to a whopping 3 lbs 10 oz. This is GREAT! As we have been warned that many times Trisomy-18 babies have a "failure to develop" or grow. And so yet another miracle! Claire continues to have her most difficult time of the day between midnight and 4am (daily). During this time, we try to hold and caress her the entire time.

Ms. Elmore is doing as good as could be expected. She will probably stay in intensive care for 5-7 days more, but hopefully will continue to improve each day.

Monday, October 23, 2006

Boy, life is indeed fragile! Just as Tammy & I were getting into our new routine with Claire, Tammy's mom became very ill. We had to admit her to the hospital last week, and they wound up taking her straight to intensive care. She had been sick with a virus of some kind, and when she could not shake it, she became dehydrated, or so we thought. Once she was admitted, we learned she had a "prolapsed bowel". As serious and painful as this sounds, we do not believe it to be life threatening. Ms. Elmore is having surgery Tuesday morning, so for now, between making the donuts every 3 hours (feeding Claire), we go visit her mom. Visiting hours are only 4 times a day for 30 minutes, so as you can imagine, our days are very occupied.

Claire still seems to be doing good, although as I mentioned before, sometimes her breathing is difficult, but it seems to get better after a while. We have a 21 day birthday party planned for Claire on Tuesday also, but due to her fragile state, we are only having a "limited" amount of guest. Watch for pictures of her "legal age" (21) party. We have decided her days are like years, and we have GREAT reason to celebrate.

Please continue your prayers, and include Ms. Elmore. As you know, Tammy has taken care of her Mom since her junior year in high school, so as you can imagine, this is a very difficult time.

Saturday, October 21, 2006

Eighteen days and still rockin on! Little Claire has had a few rough moments, but nothing to alarming. She continues to get stronger, although that is hard to determine. She has started to cry more, and it still sounds like a small cat purring. Her lungs just aren't very strong. We continue to try to hold her anytime she is awake, but we feel she is becoming a bit spoiled [I guess that's what she should expect, since she accidentally overheard us talking about it :-) ]. A friend of ours (Lelong) gave us a specially designed shirt for moms to wear to allow premature infants the comfort of feeling close to their mother and staying warm. Claire (and Tammy) find great comfort in this, as it also allows Claire to feel and hear her mom's heart beat as she had for 9 months.
Claire seems to have her days and nights mixed up too, so we hold her most of the night, and leave her in her incubator some of the day.
Please continue praying for us all, as Claire's breathing has started to bother us a tad.

Wednesday, October 18, 2006


Tuesday, October 17, 2006

### ABORTION ###

I have for years been against abortion, being raised Christian (Catholic) and in Catholic schools from kindergarten through high school, it was entrenched into my inner core just how wrong abortion is. Throughout my life, I have had several opportunities to promote an abortion in some form or fashion, and I ALWAYS did all I could to prevent or keep someone from having one. It wasn't until this pregnancy, with Claire, that I might have ever really challenged my real beliefs. When we found out early on that Claire had Trisomy-18, I would be lying if I did not say that I "may" have been able to be talked into terminating the pregnancy. You see, Tammy & I are always on the go. Every weekend, we are either at the Auburn game (home or away), or maybe the Bama game (if Auburn is playing a nobody), or at the hunting camp December & January, or the condo the rest of the year. How could we settle down and care for a "special needs" child. We just don't have the time needed for this. We would probably do this poor child an injustice by bringing her into our lives! I promise you, had Tammy just nodded in my direction and said, "what do you think if..." I might have agreed. Luckily for US, we did not breech this topic.

From about the 7th month on, when we were just waiting for a miscarry, I started questioning WHY. What could we possibly learn from this. I told Tammy, if we go all the way to term and lose the baby in the delivery room, just how tragic would that be. A full term, complete delivery, and nothing to show for it. Why not terminate early?

Let me tell you, I had NO idea just how much I would learn. Many of you have written to say God gives us what we need. I now know that to be correct. As I have said before, Claire has done more good in 14 days of life than Tammy & I in our years combined. God gives us free will, but he always wants us to use it wisely. I don't know what, but Claire still has something to teach us, and we look forward to learning from her each day.

The main point behind this is: No matter how much you teach and preach to your children; push them a little bit more, make sure they understand just how selfish abortion is, and just how lucky and fortunate we can be, when we least expect it!

Sunday, October 15, 2006

Good News, Camille did not get a cold, and neither has Claire! Tammy must have went through six cans of Lysol spray, and it must have worked.
Everything is still going well with Claire, we just are starting to feel like the Duncan Donut Man, "time to make the donuts". Every time we turn around it is time to feed Claire again. Every three hours comes fast. We have set our phone alarms to go off to help us keep up with it. It takes about 45 minutes to feed her, so by the time we finish, it seems like it is time to start again.
We have had MANY people tell us that they have sent comments in to us via this blog, and we never received them. The way this works is: All comments are sent to us first, then we approve them, and then they appear on the blog site. We approve them ALL, so if you sent us one, and it has not appeared on the site, I apologize, but we never got it. If you have had trouble, you can also go to the "profile" section and click on "email" to send us a message directly, we will "cut and paste" it onto the site.
Thanks for your continued prayers and support!

Saturday, October 14, 2006

Forget the Hoggs (but not ELIOT), We're ready for the Gators!

Friday, October 13, 2006

10 days old today! Who ever would have thunk it??? Sweet Claire seems to be getting stronger and stronger. We are very happy with her eyes, she is getting better control over them and not letting them roll back up into her head as much. I think she will be able to see us one day (if she can't already). Her color is fabulous. She also has enough strength to move her head, she can't really pick it up though.

Today was a tough day for her (and us). We changed out her NG tube, which meant we had to pull all the tape and glue off her fragile face. She seemed to take it well (better than us). The nurse (Sherri) could not get the new tube down her other nostril, so we had to go back into the same side, which meant we had to re tape her already chapped left cheek. It seems her right nostril is smaller, so Sherri could not get the tube down that side, hopefully next time we can do the right side. We also tried to give her a bottle again, but to no avail. Claire did not want anything to do with it. We are going to keep trying to get her interested in her pacifier so she can learn to suck.

I have to keep reminding myself just how tiny she is, 3lb4oz. THATS TINY!!! The pictures don't really show it. She fits right in the palm of your hand.

Camille seems to be getting a cold, and this has us concerned for Claire (and Camille). Tammy has become the "germ Nazi", (buy Lysol stock).

Tammy and I both left the house today for the first time since we went to the hospital. We were both back within 2 hours, and as good as it felt, neither of us could wait to get back. Keep sending us comments back (or emails), we love them, and please keep up the prayers!

Thursday, October 12, 2006

Our first stroll around the block
Mom trying to feed Claire
Soooooo PEACEFUL...
Another THANKFUL day!
I bet you can't do this!

Tuesday, October 10, 2006

Well, here we are at one week old and I don’t know where to begin. I have moments that I am so overwhelmed with the what if’s that it almost paralyzes me. Then I realize I truly do not know how this will all work itself out and the details I need to leave in God’s hands. I remind myself that “ALL of Claire’s days were ordained by Him,” and a sense of relief floods my heart. Billy and I have been in total agreement since the diagnosis that we are going to handle this with arms wide open, with as much joy as we can muster, and obtain all that we can from this journey.

I am surprised, the toughest times SO FAR seem like hiccups. For that I am thankful. Everywhere we turn, we truly do see a divine plan unraveling. My faith has been so bleak at times, but isn’t it amazing that He said it takes only the size of a mustard seed and POW, look what He will go and do in return! If you would have told me a week ago that I would be strolling with my husband and little baby around my neighborhood, I would’ve thought you were silly. I wouldn’t want this situation for anyone, BUT we ARE each given difficult or trying situations; and are any really any worse than the other? I look around me and think WOW; this is nothing in comparison to …

Being married to my husband has been my greatest achievement in life so far, and I can confidently say I understand why God said it is better to be together than alone because you have a good return for your work. If one falls down, the other will pick him up. I think we get so busy running our own race that we forget what our true destiny is. We have a 3lb 4oz angel that is created from love and when she locks eyes with me or smiles at me as she’s beginning to do, nothing else seems to matter. The “what if’s” melt away and we are so overcome with emotion that we are able to experience her in a way that I thought would never be possible. Isn’t that what being a parent is about?

Thank you again for all the wonderful emails and for joining us on our trip with Claire. I only thought it was an honor to carry her for 9 months, to think how sick her little body is and she has fought like a champ to be here.
Being the Rolling Stones fan that I am, ole Mic was ever so right when he belted out “You can’t always get what you want, but if you try sometimes, you might just find, you get what you need.” Our family indeed needed Claire.

Monday, October 09, 2006

Home at last - Home at last. What a great feeling! We all got home Saturday, but went into morning over Auburn's loss to Arkansas. As you have seen, Claire insisted on honoring her boyfriend (sorry Scott Spann, she doesn't listen to her parents much when it comes to Eliot) by dressing up as a razorback fan (we can only assume she is getting ready for Halloween).

It has been wonderful being home, even the every three hour feedings are not bad (yet). Claire has moved up to getting 24ml of food every three hours (through her NG tube), and is almost maintaining her own body heat. Tammy is just now getting use to the feeding ordeal. We work great as a team, she changes the diaper and takes her temp, while I am checking her stomach contents and putting her food through the tube. We keep her in an isolet (incubator) when we are not holding her, and take her temperature about every other hour, she is rarely below 97'. The Hospice nurse come by today, she took all her vitals and weighed her and said everything looked good. She now weighs a hugh 3lbs 4oz. The physicians still only think she can live for 6-8 weeks, although many trisomy-18 babies make it longer. If you have looked at the trisomy-18 link on this site (or any other), you would see T18 is ALWAYS fatal, affects every cell of the body, and each child is affected differently.
Claire hardly ever cries (it is actually funny that one of the few times she has cried, was for her razorback picture). When she does, you barely hear her. It is a very weak, soft cry, it almost sounds like a small kitten. Most of the time she sleeps. We know she can see light, as she responds to camera flashes, however, it is starting to appear that she may never actually see us. It seems she may never have the ability to hold her eyes or focus them. She often cannot keep her eyes from rolling up into the top of her head, where you can only see the whites of her eyes (it does not look good). She still can not take a baby bottle either, we keep hoping and praying that will change, so pray with us on that.

I have got to tell you, Claire is not even 1 week old yet, and she has affected more people in a positive way, than Tammy or I have done in our lifetime combined. GOD is truly glorious and works in ways that many times we do not understand. But I am here to tell you, from her Parents point of view, we see GOD'S action, and even "think" we understand it. Claire is a true BLESSING and we are so thankful to see what she has already done.


Saturday, October 07, 2006

Today, we are preparing to do what we never planned on doing, take sweet Claire home. Since we hadn't planned on this, we had not bought the usual "coming home" outfit. We had however, been given a beautiful dress for her to be buried in. It suddenly dawned on us, we already had her "COMING HOME" outfit, she may just get to wear it twice.

This is really a new beginning in our Cox Family Journey. Last night we were trying to come up with a "Coming Home Plan Of Action". Please understand, to us, and sometimes maybe only to us, Claire is nothing but a positive element in our household. Coming home brings up so many concerns, fears, and whole new set of worries, but ultimately none are to difficult for where our faith lies.

Friday, October 06, 2006

Yesterday Claire asked me to write on her blog, without hesitation I said yes. But after thinking about it, I really did not know exactly what to say, for words can not describe the roller coaster of emotions we have all experienced. The begining of the week was filled not only with anxiety, but fear as well. I did not know what to expect: what would she look like, how would I handle this, how am I going to stay strong for Dad and Tammy, how long would Claire be with us, would I even get a chance to meet her, WHY WHY WHY? I had no clue what to expect or how to handle myself. Last week, after asking my Dad some of these questions, he told me about the blog site and told me to check it out. He said he knew everything was going to be okay, and there was nothing to do put trust God. I have always heard this, but never really known how to do it. I read the site, and saw the strength and courage my Dad and Tammy had. It has to be the most uplifting and inspirational thing I have ever experienced, first hand. Their courage and faith then rubbed off on me, and I began to pray and trust that God would take care of everything. Through my daily prayers for, strength, guidance, and Claire’s health, I realized that everything was going to “okay”. Well everything was not “okay,” it was AWESOME! I never in my wildest dreams thought things would turn out the way they have. Not only have a gotten to meet Claire, but I have had the opportunity to get to know her and become attached to her. She is probably the most beautiful 3.5 pound bundle of joy I have ever seen. This experience has also brought me closer to my Dad and Tammy. The strength and faith they have demonstrated, has inspired me in ways words can not express, and for that I am forever thankful. Finally I have grown closer to God. I have learned to let go and trust God, because without God, nothing is possible. I have also learned the power of prayer. I truly believe that Claire is here today because of the countless prayers from all of our friends and family. One main quote that has stuck in my head for the past several weeks is, “Measure your life in love.” Every time I think of this quote, all I can do is think about how it applies to Claire, and the love and support that has been shown for her by everyone. Claire really is a miracle, and a gift from God. I now thank God everyday this miracle, because she has changed my life forever!
Great News - PRAYERS WORK - We were told Claire would be born with a severe heart condition called Tetrology of Fallot. We were just informed she does NOT have this. This was a big concern of ours. She does have a heart condition , just not nearly as severe as we were told.
Good Morning all! Thank you so much for all the support, loving thoughts and PRAYERS that have all been sent our way. You really realize in times as these what the true meaning of life is really all about and WOW, how fast we seem to get off track! May we all benefit from this experience to reevaluate each of our lives...
As you noticed in the slide show, Claire was born blue and continued to grow more and more blue with her heartbeat dropping to almost nothing. Billy's only goal now was to rush her to My side and then to have her baptized. How thankful I am not only for my wonderful strong husband but my fabulous doctor who had me numb to my surroundings. My first question was "is she alive?" I knew from the soothing, calm answer from Billy "she's perfect" that it wasn't good. Then Father O'Connor baptized her. When I came too,I witnessed for myself this miracle. Alfred Wacker, you will never know how right you were when you blogged us before we went in for delivery that "we were about to meet an angel". Yall have to know what your messages have done for us, such a source of strength especially when at times we ourselves don't have it. I went into delivery repeating, we were about to meet an angel, and how TRUE that came to be! MIRACLES DO STILL HAPPEN.
As the slide show clearly shows the blueness went straight to fabulous color and here we find ourselves a day before going home AND appear to be able to take HER WITH US!!! You will not find anyone smiling bigger than me or my husband!
If you could see our room and hear what the nurses say as they come in, you too would be impressed. You can smell the wonderful fragrance bellowing from our room all the way down the hall. Thank you for these beautiful flowers and encouraging notes. It is our daily highlight to sit and read all that you have written. I hope each of you are rejoicing with us over our Claire, for she truly wouldn't be here without each of you.

Thursday, October 05, 2006

Good Morning, another glorious night with Claire. Mommy has already been up, dressing up her little miracle with bracelet's and pink fur. Claire wants a photo shoot a little later with big bro Johnny, & I'm sure we will soon have pictures of her all dolled up.
Claire was weighed for the first time since birth. She has only lost 1oz, so now she weighs 3lb5oz. We are super pleased with just 1oz loss, although I'm sure she will continue down in weight for several days. They usually do not allow regular babies to go home until they get to four pounds, however, since nobody knows if she will even get to 4 lbs, they may let us all go early. We will just have to monitor her closely at home (when we get home, we will probably wish we were back here with so much help).
Please continue your prayers, you have NO idea how grateful we are, and how helpful they are! She is appearing a little jaundice, so we are waiting on lab results now. Of course, this should be only minor, but we are worried that this may be an early sign of certain organ problems. PRAY ON!!! We are going to try bottle feeding again later today.
We have added a new feature to our blog site. If you would like automatic updates whenever we post new blogs, register your email address in the box to the side, then follow the directions.

Wednesday, October 04, 2006

SHHHHHHHHHHHHHHHH Big sis thinks she knows how to be quiet

Tammy could not be doing any better, she is incredible. We want to thank all of you for the blogs and flowers and prayers. This is so far an incredible journey. Although we cannot wait to get her home soon, we are very worried and scared as to whether we really can handle our gift. I'm sure God will help.

She is not even 36 hours old yet, and we have already had to start "interviewing" potential suitors. A little boy named Eliot has come a callin. We are of course trying not to be to noisy of parents, however, we just are not real sure about "mixed" marriages. You see, he has been seen wearing Hoggs paraphernalia, and possibly even screamed "ROLL TIDE". We think we should make sure either of them is willing to "adjust" to the others needs. Claire has proposed to wear Arkansas Razorback clothing if Auburn loses. We are hoping that Eliot will agree, but you know how hard headed little boys can be. So don't be surprised if you see her wearing Razorback clothing come Monday.

If you have a chance, I recommend you visit his blog site at http://mattandginny.blogspot.com/ He is now close to 80 days old. If it were not for Eliot, we would not have any idea as to what a blog site is. Somehow, someone (by the grace of GOD) sent us his blog site as an inspiration, and boy what an inspiration he has been.
HAPPY ONE DAY BIRTHDAY!!!! She had a completely UNEVENTFUL night, and it was GREAT. Claire continues to gain strength and coordination. We think we may have even heard her say War Eagle, but we're not sure.
Many times, children this small, even without trisomy, have a hard time sucking, swallowing, and breathing all at once. Claire was not able to do this either, she seemed to want to eat only, and forgo the breathing part (just a minor detail). She also seemed to spit out everything, without really swallowing it. We of course began to worry that her stomach did not attach to her esophagus (which can be common with trisomy babies). We decided to insert a small feeding tube through her mouth. Luckily, it did enter her stomach (which we assumed was great news). So now we feed her 13ml of formula through this tube. It is very easy, and possibly just temporary, until she gets a little more weight on her (and better coordination). So do not get upset if you see a picture of her with this tube, it is actually another good sign.
Mom is up and about, doing better than you could ever imagine.

Tuesday, October 03, 2006

Wow, what a day!!! We got to the hospital at 5am, and by 8am we had our Claire. She weighs 3 lbs 6oz. To look at her, you will not even know she has any problems. She is BEAUTIFUL. What a Miracle. The Medical team said we should bring our Priest in immediately. NO time to lose. She was very blue, not breathing properly, and had a heart rate dropping fast. We took a few last pictures, had a Baptism, and just held her close. The staff wanted to know if I wanted to continue to hold her, or should they take her.

Within 4-5 minutes, all apparent bodily functions began working properly. She got pink (which is good), and appears normal and healthy. She still has Trisomy-18 . We are still told we will be lucky to have her 2-3 months. They should realize we are already lucky, she has already beat all odds.

Mom is doing GREAT too!

Monday, October 02, 2006

Things are starting to get a little more real around the Cox household today. We know that Claire can be healed, and even though this is our will, it may not be His.

Since this site is dedicated to the Preparation, life, and death of Claire. We felt that today would be a good day to share with you some of our preparations for her arrival. We have had to make some difficult decisions for her expected short life. For example, since she may only live ten minutes or less, we have chosen to not have her put directly into a "warmer", as most babies are. Instead, we want to have "warmed" blankets readily available and hold her right away, this way giving her as much skin to skin comfort as possible. We have also decided not to intervene with any kind of "extra-ordinary" life support. Also, it is common with trisomy-18 for the child's esophagus not to be attached to it's stomach. We will have a feeding tube inserted if needed as to not have her suffer from starvation. We have basically taken the position as to give her anything for comfort, love and peace.

We have notified our priest, Father O'Conner, who will be at the hospital at the time of delivery for immediate Baptism. We have also bought burial plots for Claire, Tammy, and I, as well as an extra one (we may not like having neighbors real close to us, ha-ha). If you have not done this, I highly recommend it. It was a very difficult decision as to where to go, mainly because this is the ONLY decision in your life that will be permanent. But it is a comforting feeling, and enjoyable (although Tammy did not see it like this). Although our situation will be changing from hour to hour, we feel like we have addressed any possible scenario and are prepared for it.

We want to thank our family and friends for all of your support. We get excited each time we log onto this blog spot and read the comments you have left for us. They have been very uplifting for us and have helped us immensely through this difficult time. Many of you have asked if we mind if you send our site on to someone else, and of course we do not mind, we need all the prayers and support we can get. We will update this tomorrow as soon as possible.

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