A day in the Life of Claire

2006-11-30T14:51:00.001-06:00

CLAIRE HOPE: Oct 3 2006-Nov 28 2006

Exactly eight weeks to the day! This will be our last post to this site, as it is dedicated to the "preparation, life, and death of Claire". They told us probably 6-8 weeks, and boy were they correct. So many people have asked (or we have just said) how our last days have been, so we decided to share the whole story, because we believe it is beautiful! Don't misunderstand, it hurts, even more than we had anticipated. We knew it was coming, we knew to expect it, and we thought we were ready, but we were wrong!

Let us start by saying the last 15 days or so were long, particularly the nights. Claire used almost all her energy and breaths to cry. She would start around 11:30pm and cry (seemingly in pain) until about 5am. On Monday night, the same happened, except this time she was not crying, just having difficulty breathing. She seemed to get better around 5am, so we laid her back in our bed and slept. At 830am I was leaving to take Emily to an orthodontist appointment and before I left I needed to hook Claire up to the feeding pump. When doing this, I thought how peaceful she looked, almost too peaceful. So I checked to make sure she was still with us, and she was! Tammy would check on her about every 15 minutes, and while bathing Camille, she left the tub to again check on Claire. It was this time, around 930, that she found her. So as you can see, Claire was at complete ease all morning. What a beautiful day! (difficult, but beautiful). Nurse Sherri came and pronounced her dead at 10:13am. We had heard of other families bathing their infant, prior to calling the funeral home, we thought that was morbid, however, during this time, we decided we wanted to do just that, and what a great pleasure it was. Tammy bathed her lifeless body, and was able to brush her clean hair, add all the body oil and fragrances like she always has, and then let them take her away. It was extremely hard to let her go, but what a great experience to have with your child that one last time.

For those of you who have been traveling this journey with us from early on, you may remember our decision regarding what to bring Claire home from the hospital in. Well, we once again got out her beautiful dress to again, "send her HOME" in.

Thank you all for walking with us through this journey, and again, please do not hesitate when you see us to TALK, LAUGH, CRY, REMINISCE, ETC about this journey, trust us, its on our mind and we like to address it with you if you feel the need!

GOD BLESS US ALL AND ONE DAY WE WILL MEET HER AGAIN!

_______________________________________________________

I always felt so honored to be Claire's Mommy, even before we had formally "met". Now, the day after her passing, she never ceased to amaze me, humble me, on how I got so lucky to be this child's Mother. All parents (especially Mom's) sit around and brag on their children. Its just a rule at being a Mom. Please allow me my moment to brag....

She entered this world surprising us all. She left us here together astounded. Her passing has left us both as parents stunned at the effect that she had on us. I always knew from the moment we learned of her illness, before she ever came to be, all of her days were ordained. How glorious and comforting to know that in the midst of it all, there truly WAS a plan....a divine plan. Divine is defined as; of God, sacred, holy. And so it was. I have taken so lightly that God truly has a master plan for us. Claire showed me this. Claire showed us that even in what was to be a negative thing, an illness and death, that all things truly will work together for our good. She drew out of us to live by our faith, for we truly lived moment by moment. She showed her Mother who was to be teaching her that I didn't need to know the details....in the appointed time, we would. As for Claire, she showed herself in such a way, I want to make her proud. I want to be a better person in EVERY way because of the pureness and life that gushed from her tiny being. She has left me full of hope to be confident of what is to come; for what I feared would be the worst time of my life could not have been more full of Jesus. Death is not something I now fear, how proudly my child taught me this. To know we were there holding her to usher her "home", I am honored. I bragged today that I do not know how God has had the time to give to anyone else because he has been encamped in our home to every detail. My child taught me that Matthew 10:30 is indeed true that the hairs on my head are all numbered. He orchestrated it all "custom fit" to us as her parents.

In almost every detail of her passing we changed what we had thought we would do. And we are so glad. The biggest change was in seeing our Claire for what would be our last time here on earth. We had thought yesterday, when finalizing the plans at the funeral home we would not see Claire nor would we have an open casket. We were so blessed to have had such a beautiful experience to her passing, we feared that seeing her might leave us heavy laden. We decided this morning that we would expect the worst but brave it just to have no regrets, and Claire outdid our expectations, and whispered in my ear, see Mommy, God IS able to do exceedingly, abundantly, more than we could ever ask, think or imagine(Ephesians 3:20). Not only did she radiate beauty like I have never seen before, she possessed that peace that surpasses all understanding (Philippians 4:7). Leave it to our baby girl she even had a little smile, as if a smirk to show that there was joy in this day. We have yet to relish in this joy, but she has shown us that we will.

The loss of Claire is large. I told Claire I would try to not embarrass her today and I found such joy in thoughts of her and Eliot watching, and Eliot comforting my little lamb and telling her, "that it's okay, my Mommy was the same way". What a blessing...

For what we thought was our journey with Claire, the path is now unfolding. But he promised us that He would go before us and prepare the way and that He would show us this is the way, walk now in it....

__________________________________________

We are leaving today to travel by RV - We will return home, sometime!!!!

2006-11-29T19:34:00.000-06:00

Claire Hope CoxOctober 03, 2006 - November 28, 2006

Claire Hope Cox - An infant born on October 3, 2006 departed this world at her home from a chronic illness to join her heavenly father on November 28, 2006. Although her life was brief she touched all those who met her. She is survived by her loving parents Billy and Tammy Cox. Grandparents Eugene and Doris Cox, Lynda Elmore. Claire had four loving siblings Carrie Stuart (Bry), John, Emily, and Camille Cox. One special niece Maggie Stuart and a host of Aunts, Uncles, and cousins. There was a private grave side service at Pinecrest Cemetery.

Psalm 139: verse 13 - 16

For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be. Amen, Claire

Claire Donations can be made to the Mercy Medical Pediatric Guardian Angel Program in memory of Claire Hope Cox. Mercy Medical Development office P.O. Box 1090 Daphne, AL 36526 Phone 621-4884.

2006-11-28T10:24:00.000-06:00

AMEN!

2006-11-26T23:07:00.000-06:00

We have been discussing how thankful we are for so many, many reasons this holiday....and of course one of them would be our Claire. It is so amazing how you can feel two exact opposite feelings simultaneously! How could something so innocent and tiny make us flash from one emotion to the next? For instance, one of my highlights today was sitting on our living room floor playing with John, Emily, Katlyn, Billy & Camille; and there was Claire! It seemed so overwhelmingly wonderfully....normal. We were playing games, girls loosing horribly to the boys (they cheated) and we would pass Claire around to one another when it was our turn. Normal is defined as not diseased, to us, she is our norm;our standard, model and pattern. She is showing each of us in our family something so priceless, she is teaching us to set our standards high. To model ourselves in our faith and to pattern our actions not on what we see or feel, but rather on what we know and believe.

I enjoyed watching "The Bishops Wife" today on the old movies station. Cary Grant played an angel, who was sent to the Bishop and his family, and had such an impact on everyone. Everyone except the Bishop that is! This angel told the Bishop he was sent there for him, because he had prayed for guidance. It wasn't until the end the Bishop accepted this angel and received what he needed. I found it to be true in our life with Claire, each day embracing her and her life. For she was designed just as she is and brought to our family and even as hard as it is due to the fear or the unknown of her condition we are going to respond positively to this situation.

It's beginning to look a LOT like Christmas in Claire's house these days! We will post some pictures of her in the next few days of her decking the halls. She must be worn out from all of her holiday tasks because we finally had a good nights sleep last night.

Billy named this "A day in the life of Claire" and it is amazing how at the end of the day, there are not enough words to convey what her day was really about.

2006-11-22T09:04:00.000-06:00

You may have wondered why we have not updated the blog since we last told you we had a feeding pump. You may have guessed that we finally got to sleep and slept for days, OR that she still cries the whole time the sun goes down. The later would be correct! Still from about 11pm to 5am, Claire is not only awake, but crying as hard as she can. We think we have tried everything, and she has no problem using the bathroom, so we just continue to rock, walk, sit, anything to try to appease her. Tonight, instead of trying the slow continuous feeding, we are going to attempt to feed her larger amounts periodically, hoping to "fill" her tummy and then stop. We just wonder if she "feels" hungry not having a full meal from time to time.

Claire continues to attempt to suck a pacifier, but fails to understand the concept of a bottle. Tammy enjoys trying to feed her by bottle, but I wonder sometimes why not just take the top off and pour it all over themselves, because that is what it looks like when she finally gives up. It can be quite funny.

We had the pleasure of meeting Eliot's parents, Matt and Ginny, this past weekend. They came down to the beach with some friends, and boy what a pleasure. We all prayed together and gave thanks for our children. They are as nice as the blog site made them sound. They are a wealth of information for us, and we want to thank them publicly for everything they have meant to us. Eliot was a lucky boy!

Claire has asked for a turkey leg tomorrow, we think she likes the skin the best!
HAPPY THANKSGIVING

2006-11-17T22:39:00.000-06:00

DOES LIFE GET ANY BETTER THAN THIS!!!

Today is the day before the IRON BOWL, it always proves to be a great game, regardless of who wins. Also, today we had delivered a pump, which will feed Claire all night. So we no longer have the need to wake up every 3rd hour, waking her up, to feed her. You would think I am a child at Christmas. I have not looked so forward to going to bed (to get a good nights sleep) in quit a while. Of course, there is still no guarantee that she will sleep the through the night. If nothing else, at least we no longer have to set our alarms.

Wish us great sleep. We will let you know tomorrow how successful it was.

2006-11-15T21:41:00.000-06:00

For any of you paying attention, yesterday (Tuesday) was Claire's 6 week birthday (42 days). You may remember, the cardiologist told us that she would probably start having more severe problems starting around 6-8 weeks, due to her bad heart pumping most of her blood to her lungs, and not to the rest of her body. They said the lung pressure of newborns is much higher at birth, and this pressure starts to decrease to normal pressures around this time (6-8 weeks). This increased lung pressure has been helping push her blood toward the rest of her body. Well, I have to tell you, it seems they are pretty accurate. We "think" we can tell a difference not only in her appearance, but also in her alertness (both seem to be deteriorating). She still has some good days, however, it seems it is more like "good hours" instead of days now. Her breathing seems more difficult most of the time too.

On a lighter note, she appears to have her days and nights mixed up, sleeping a lot of the day, and awake (and crying) almost all night. This has been going on now for 5 days, and yesterday (Tuesday), I thought I had figured out why. You see, we keep her in our arms or her bassinet for the whole day, and at night, we put her back in her incubator (we call it her "house"). The only reason for the incubator was to help her maintain body temperature, which she can do by herself now. So anyway, I decided we were "cooking" her by night (her house stays at 85 degrees). I too would stay up all night and cry if the bedroom stayed that hot (remember after the hurricanes and NO power for weeks). Anyway, we could not wait to go to sleep last night, thinking we would finally get a good nights sleep (for us now, that means feeding her for 1 hour, then sleeping for 2, and then getting back up to feed her for another hour-sleeping 2 out of every 3). Well, needless to say, we must not have been "cooking" her after all, because she still stayed up from the 11pm feeding until the 5am feeding. So when people ask us how we're sleeping, we say, "we're sleeping just like a baby" (you can interpret that many different ways).

Please don't misunderstand us, Claire is a very easy baby to care for most of the time. The only difficult thing about dealing with her is the "stress" level of not knowing. We never know if whatever she is doing at that particular moment, is a Trisomy affect, or just a normal infant cry, or if it may be her last cry. Occasionally, she appears to be crying out (ever so softly) as if in pain, but even normal infants cry out this way (colic, gas, BM, etc). So we just treat her as we did Camille, or any other infant, and just try to treat any symptoms we detect, and if we can't detect any, then we try to perceive something like colic or gas and treat that. If she were older, we could blame teething, isn't that kind of a catch all for toddlers crying for about 3 or 4 years?

When you see Claire, please don't hesitate to tell us if you think she looks better or worse than the last time you saw her. We really would like your HONEST opinion. We see her all day every day, and that makes it hard for us to notice changes over time.

With all this said, understand why we might look as if we have bags under our eyes, or look like we're in our 40's, instead of our 20's :-) .After all, our child is now older than we are (if you count her days as years).

2006-11-12T21:44:00.000-06:00

Necessity is the mother of ALL inventions!

You can see how silly this looks, but it is very convenient. One night recently when John decided to feed Claire all night for us, so we could finally get a full nights sleep, he insisted he would not wear this contraption, however, before the night was over, he had become a user

2006-11-12T21:00:00.000-06:00

This is Claire in a baby doll carrier! She fits so much better in this than in a real car seat. We do get some funny looks though.

2006-11-12T20:53:00.000-06:00

Claire seems to try to take her bottle much better after learning the pleasures of a lollipop

2006-11-09T20:34:00.000-06:00

Enlighten my eyes of understanding that I may see YOUR face in this pitch like darkness.... If you look up understand it is defined as to get the meaning of, know well; know HOW to deal with, be informed, take as a fact; BELIEVE. Well, I feel we have worn this verse out in our prayers!
As hard as this is at times, it truly has been equally balanced with positive events. We are so humbled by the support and encouragement we have received that it somehow makes the hurt seem to subside. Just like yesterday for instance, the weather was perfect and we decided to happen in our familiar stomping ground of Heron Lakes, and what we experienced was overwhelming. Besides the pumpkin patch, it was our first outing with Claire; especially to eat. Everyone there came up to us and you could truly feel the love and support, and some of these people we didn't even know but they have been keeping up with Claire through this blog site. Boy it sure makes us feel much better when feel this kind of support. We know we have support like this, it was just amazing to see it first hand. THANKS to all.

My Mother came home yesterday, with round the clock care....but home at last! She literally dove into her bed as soon as we got there and said with a smile; it's so good to be home and in my own bed. Now we can go and take the girls to hang out and allow Mother to get to know her miracle granddaughter. What a wonderful moment it was as they got to meet....something we feared may not have happened. Another thankful day....

2006-11-07T11:48:00.000-06:00

No real news here. We think Claire continues to struggle to breathe, but she continues to have "easy" times intermittently. She is now up to 4lbs even. This is the weight they initially wanted her to be at before they would let us come home. So thankfully we have had a "bonus" month at home! The last couple of days (over the weekend), we felt she was looking extremely tired and peak. We called in Nurse Sherri on Monday, and by the time she got here that afternoon, Claire had started looking and sounding a lot better. Even the nurse said today was the first time she was able to note on her chart that by her being so alert, she was moving both hands and feet together and was showing reflexes. She thought Claire was quite alert as did friends Rachel and Michel that had stopped by.

Claire still does not suck or take a bottle, however, Nurse Sherri told Tammy to put a sucker in her mouth, and Claire loved it !! (you know Tammy loves her sweets, and of course wanted to make sure Claire would be able to enjoy this benefit of life). We are going to continue trying this, along with adding flavor to her pacifier, in hopes we can teach her how to take her bottle. Tammy is also glad she will be able to enjoy the "finer" things in life, SWEETS.

2006-11-02T22:49:00.000-06:00

Claire is sleeping better today than she has slept before, mainly because she has never worked as hard as she did today. She spent 5 hours with our photographer friend, Laura Courtney, doing an exquisite photo shoot. This is a preliminary sampling of Clarie's hard work. Click on http://www.lalaportraitsgallery.com/claire/ (be sure to scroll to bottom and click "view full screen" as well as turn up your volume). It is hard to look at this peaceful, sweet little angel and realize just how sick she is. We hope you enjoy it as much as we have, we have never been more proud of our little miracle! What an ANGEL......

2006-11-01T22:00:00.000-06:00

There is not a whole lot happening lately. Claire continues to amaze us as to how much and how often she eats. She also continues to gain weight, she is now up to 3 lbs 15oz, just one more oz & she's at the big 4.0. We did actually take her out to the pediatrician on Tuesday. No real reason, he just wanted to see her. No RSV vaccine, No TB vaccine, No normal shots any other kid would get. Really just to get her accurate weight and recalculate the amount of food she should be getting. This was all good, but we had accurately guesstimated her correct intake (I guess it is good to know we had done it correctly). He did say he could not really hear her heart murmur, but only because the hole in her heart is sooooo large, it does not make the usual noise. It is really just like "one big ventricle", instead of two, pushing her blood primarily all to her lungs and back (but we already knew this).Her color continues to look good, as well as her breathing most of the time.

Claire is so tiny, we have learned that she fits perfectly in one of Camille's baby doll carriers much better than a real car seat. We just do not hold it by the handle as to not take a chance on it breaking. It really looks funny to see a real baby in this TINY doll infant seat. Camille does not appreciate loosing her toy to Claire, we are really not sure if appreciates her at all, a slight bit of jealousy. We have also "invented" a special feeding device which helps with this hour long process. It is nothing more than a simple baseball cap with a few holes cut in it to hold the syringe, this way it frees up a hand to: work the TV remote, or drink a beverage, or fight off Camille. It is really quit funny looking to wear it, but sure is convenient. We are going to put a few funny pics on the site soon for your amazement. John is coming home from Auburn every weekend to help us take care of Claire, and he is a huge help, both with Camille as well as "peanut".

Ms. Elmore is finally out of intensive care and in a regular hospital room. It is very slow going, but she continues to make progress. She has yet to see little Claire, so hopefully soon they will meet.

2006-10-30T05:50:00.000-06:00

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.

2006-10-26T19:47:00.000-05:00

Look ya'll, MINI ME!

2006-10-26T19:43:00.000-05:00

2006-10-26T19:36:00.000-05:00

This is the FABULOUS Kangaroo Pouch that our friend Alex made and it has been Mommy & Claire's favorite time together...

2006-10-26T19:32:00.000-05:00

Mini me (x2)! Both look like their Papa.....

2006-10-26T18:21:00.000-05:00

Just a few runner up pumpins

2006-10-26T18:14:00.000-05:00

The winning pumpkin!

2006-10-26T18:08:00.000-05:00

2006-10-26T18:04:00.000-05:00

Tammy in her halloween spider hat!

2006-10-26T15:31:00.000-05:00

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.

2006-10-23T12:32:00.000-05:00

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.

2006-10-21T20:37:00.000-05:00

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.

2006-10-18T22:49:00.000-05:00

ANOTHER MIRACULOUS DAY (15)!

2006-10-17T21:06:00.000-05:00

### 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!

2006-10-15T20:39:00.000-05:00

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!

2006-10-14T13:52:00.000-05:00

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

2006-10-13T21:04:00.000-05:00

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!

2006-10-12T16:34:00.000-05:00

Our first stroll around the block

2006-10-12T16:33:00.000-05:00

Mom trying to feed Claire

2006-10-12T16:30:00.000-05:00

Soooooo PEACEFUL...

2006-10-12T16:11:00.000-05:00

Another THANKFUL day!

2006-10-12T16:05:00.000-05:00

I bet you can't do this!

2006-10-10T22:42:00.000-05:00

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.

2006-10-09T21:53:00.000-05:00

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.

2006-10-09T17:00:00.000-05:00

I SAID I WOULD DO IT,

BUT I DON'T HAVE TO LIKE IT.

I LOVE YOU ELIOT!

2006-10-07T06:24:00.000-05:00

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.

2006-10-06T20:09:00.000-05:00

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!

2006-10-06T12:26:00.000-05:00

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.

2006-10-06T07:08:00.000-05:00

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.

2006-10-05T17:25:00.000-05:00

2006-10-05T09:21:00.000-05:00

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.

2006-10-05T08:04:00.000-05:00

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.

2006-10-04T22:08:00.000-05:00

SHHHHHHHHHHHHHHHH Big sis thinks she knows how to be quiet

2006-10-04T21:03:00.000-05:00

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.

2006-10-04T11:40:00.000-05:00

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.
LIFE IS GOOD!

2006-10-03T12:34:00.000-05:00

2006-10-03T11:17:00.000-05:00

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!

2006-10-02T10:15:00.000-05:00

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.

2006-09-27T20:51:00.000-05:00

Hi, after much hounding from my husband, I am agreeing to explain what this is like for me and how this has impacted my life in such a pivotal way. The bible clearly states, “No eye has seen nor ear has heard, no mind has conceived what God has prepared for those who love him” (I Co. 2:9). We were told that without a doubt Claire would not make it full term. The doctor wanted us to undergo steroid shots weekly in order to get Claire’s lungs ready for early arrival. They also wanted to run stress tests twice weekly, and stated that they would take her the first moment she showed signs of distress. We felt this was in our ultimate doctor’s hands, Jehovah Rophe, and He would take her when He was ready. He is going to do His will in both ours and our child’s life. I sit here today one week from delivery and you couldn’t find someone with a smile any bigger on their face than mine or my husbands. Certainly my mind runs wild with curiosity as to why God has allowed us to go full term, or just simply why, why, why? But ultimately that is unproductive and I remind myself I have not seen yet what God is preparing for me and my family in this situation and instantly the joy returns. Although we have no idea what we are about to embark on this following week, GOD IS FAITHFUL!

Over the past few months of pondering the bible, and just seeking to find all that God wants to show us through this experience, it has been nothing short of a privilege and an honor to carry this child. The fact that God chose my husband and me to be the humble parents that was able to help in this life being formed does nothing short of taking my breath away. There are two scriptures that have stood out to me especially since the time of her diagnosis: Jeremiah 1:5, m- “BEFORE I formed Claire in the womb, I knew her,” and Psalm 139:13-16, “For you created Claire’s inmost being; you knit Claire together in my womb. I praise you because Claire is fearfully and wonderfully made; your works are wonderful, I know that well. Claire’s frame was not hidden from You when she was made in the secret place. When Claire was woven together in the depths of the earth, Your eyes saw Claire’s unformed body. ALL the days ordained for Claire were written in Your book before one of them came to be.” Amen. It just doesn’t get much better for me.

I am so lucky to have been given this life that I have and it is built on my faith in God. Apart from my faith and Him, I can truly say, I am and have nothing. I can confidently say as for God, HIS way is perfect for me….and my family. We have been militant together and grown immeasurably and we are better people today after going through what we have faced. You will never know how much it has touched us to have the support and love shown to us as we have through those surrounding us and even by those we yet to know. Please continue to think of us and our precious Claire in the following days to come and pray that we do not rely on our own strength and abilities through this, but rather through HIS.

2006-09-22T00:21:00.000-05:00

While out in California at a christian camp with my daughter Emily, I heard for the first time God talk to me. It was not a loud voice, or even an audible sound, rather just a "hint" of an idea.

Going to this camp (JH Ranch), my sole intention was to grow closer to my Daughter Emily. Although most of my prayers before I went (as well as after getting there), was to better my relationship with Emily, I of course also prayed daily for Tammy and I's unborn child, Claire, who has been diagnoses with Trisomy 18.

At lunch the 2nd day, I had a very distinct urge to go talk to the assistant, Mack, that made the announcements at all the meals. Well, I ignored this urge, and went about my business for that day. The next day, at lunch again, I had the same urge. I did not realize that this had come across me the day before. This time I paid a little more attention to it. I got up and went toward Mack, but at the very last minute decided I NO idea what I would discuss with him. So instead I veered off to the salad bar, which was beside him, and made a salad. I did not want a salad, so after making it, I just left it on my table untouched. I thought that was very odd for me, I'll talk to anyone and I never take food if I do not intend on eating it (but what else was I to do, walk around him like an idiot with no direction???).

Later that night, Mack was the speaker. Macks topic was the best 75 days of his life. Many years early, he and his wife had a baby that lived for only 75 days. What was an extremely difficult time for them, was also the most amazing and wonderful time of their life. They had to stay by their child's side around the clock, and aspirate her and sometimes even assist her breathing. Instead of them questioning their religion as they had been, they suddenly felt much closer to God and to each other.

He went on to say that their baby (Elizabeth) had a very rare disease called Trisomy.

COINCIDENCE ? ? ? I THINK NOT ! ! !

2006-09-21T22:36:00.000-05:00

Well, well, well...... You will all have to put up with my bad English and poor spelling if you wish to keep up to date with the happenings of Our delightful Claire. Our intent is to post all kind of "diary" type info here, (two to three times a week)that we would like to share. If you find something interesting in this blog, and would like more details, please do not hesitate to call us. We are only using this technology as a way to bring you up to date, without having to tell our story 8 to 10 times a day.

The official "kick off" of this blog is going to be the day we actually bring Claire home from the hospital. We understand, and want you to understand, that this is already a long shot. The projected life of children diagnosed with Trisomy 18 is usually hours to days. Until then, we will post periodically just to let you know our thoughts and feelings as Claire's arrival approaches.

Just to get you up to date from the beginning: We first learned something may be wrong with Claire when we got the results back from a blood test done early during our pregnancy. It told us the odds of our baby having trisomy 18 was 10:1 (it usually comes back something like 3000:1). We were given the option of terminating (aborting) the baby at this point, but for us, that was just not an option. Although we prayed and held out all hope that our little Claire would still turn out perfect, we knew that if something was wrong, God would have some master plan that we may not understand, but will indeed have some purpose. Well, as time went on, more and more test came back that still indicated possibly Trisomy 18. The physicians wanted us to do an amniocentesis early on, but since this can increase the possibility of causing early labor, and even miscarrying, we decided against it. We felt like regardless of the results of the test, there was just nothing that could be done to correct the problem.

We continued to pray, and unfortunately we continued to get back bad results. Next we found out that Claire has a very bad heart condition call a ventricular septum defect (VSD), and possibly worse, something called Tetrology of Felot. We also found that Claire has her little fists clinched up very tight and in a very awkward position, which is also seen with Trisomy 18.

We finally gave in and had a amniocentesis done, which came back 99.9% sure she indeed has trisomy 18. That is still OK, we continue to pray for healing, or understanding as to why or what God's purpose is in this matter. We, or You, will indeed learn something from this, and will be much better off at some point.