Thursday, November 30, 2006

SHE'S HOME !!!!!

Plan C and D

As I said, make no plans.

We miss our daughter; they miss their sister; we long for our family.

Today Ivey's homecoming was stalled for one more day. We guestimate that she will now come home on Thursday, but do not be suprised if it turns out to be Monday. The hold up revolves around our nursing service. Nurses just are not available for our area. Amazing, we live in a town with two great hospitals and a nursing school and there is a shortage of nurses. So, if anyone out there is interested or knows someone who is interested in pediatric home health care, I would love to send you information to contact our agency. We seem to be stuck at square one.

Matt really wanted me to share our good news with all of you. I am not quite sure how to word this so you experience our excitement about today's events with Ivey. I know that I have mentioned this, but I have not spent much time on it. With the trach, Ivey no longer makes sound. The air to her lungs is rerouted; therefore, the air does not pass through her vocal cords. Ivey has been 'mute' for the past month. We watch her face squinch up when she cries, but there is no sound. She smiles, but no sound of squeels or excitement. No cooing or 'talking' back to us. We have not heard her sweet sounds in over a month. All things that she was doing before the trach.

Today for the first time the respiratory therapist placed an attachment to the trach that allows for air to enter through the trach, close off the trach, then the air passes over the vocal cords and out her nose. Thus,

SOUND!!

The emotion of that moment surpassed the feeling of the first breath and cry of a newborn. It brought tears to our eyes.

Let me just say that she had plenty of built up thoughts on the past month. She told us the news. Three babies come into our home and today is the first time I have wanted one to cry. The respiratory therapist warned us that many babies would not take to the valve and it may not be an option. After a few minutes, Ivey stopped crying and started making sounds - just to hear herself. And then she fell asleep.

I had forgotten how wonderful it sounds when babies sleep and they take that deep breath and let it out in a 'hmph'. The sound that lets you know they are in deep deep sleep. It is the little things that make this world go round!

Ivey not coming home today or tomorrow has probably been a blessing. Both Knox and Walker have had a bug with fevers. No since bringing her home to that. So, it has actually worked out for the best.

gwen.

Plan B

Didn't I say that things are subject to change without discussion or warning when it comes to Ivey? Well, put a great big X through Tuesday and circle Wednesday. She should be released from the hospital and on her way home in another 48 hours. That's the plan.....

The doctors feel that she is ready. After a long emotional stay, Ivey has benefitted from her hospitalization. The paralytic that she was under in the beginning of her stay seems to have loosened her up a bit. Ivey has alot of tone. Unlike most babies who are pretty floppy, Ivey's muscles are tight and her range of motion is extremely limited. Now, her muscles have relaxed emensly. I think Ivey's physical therapist will be extremely happy with the results.

Ivey's lip and nose look beautiful weeks after the cleft repair surgery. We are to assume that she will return in about three months for the surgery on her palate. A surgery that will require another hospitalization.

She is adjusting to the PEG tube. Her face looks beautiful now that is has cleared up from six months of tape. Who doesn't love that soft baby skin? Her reflux has improved immensly since that PEG has been inserted. And the best part, she can't pull this tube out in on a whim.

The trach is our newest, most complex gadget. Now that Ivey can breathe better she seems happier and more content. We can't be certain, but the doctors seem to think that the trach will be out within the year. Somewhere in that time, they will attempt to reconstruct her airway. Due to the trach, Ivey will have several pieces of equipment that will always accompany her. She will have her suction machine (which we have had since day one, but often left at home), a pulse-ox, heart monitor, humidifier, and an emergency kit with extra trachs and ties. You will all adjust to this with grace and style, just like you have everything else in the past.

Ivey also has an appointment with her occularist tomorrow that she will obviously miss. Another 6 weeks has past and it is time for another set of conformers. I did speak with the occularist about missing the appointment; he is mailing Ivey's new set. There is something about this that makes me want to giggle!

Ivey is still hitting the scales weighing just under 10 pounds. She is trying to pull her self into a sitting position. I believe that Ivey will be able to sit on her own. She loves to sit in her Bumbo seat. She is also pulling herself to her sides. Hopefully once we get home and she has a little more freedom, she will begin to roll over again. Her favorite pasttime is sucking on her thumb and fingers. She is really developing a sassy little personality.

My favorite thing that she does is smile. It is a quirky beautiful smile. She is smiling when she hears us enter the room. Ivey is just very content and happy. Her smile makes all of this worth the wait and the pain of her being away from home for a month. To know that she is happy and comfortable despite the challenges she has faced, makes this a journey worth traveling.

So here's to a happy ending and Home

gwen.

ps - Continue to pray about her home nurses.

Knox, Walker and I woke up this morning to a Thanksgiving Day unique unto its self. Unlike years prior, they are not waking up together with their Dad or walking into a baby's room to celebrate the first Thanksgiving Day. After a tough year, thankful is an understatement to describe the joys we/I appreciate this year. For the first time in 31 years I realize that I do not need a single day to remind me of my blessings or a special day to celebrate those blessings. Here lately, I have hit my knees in my own solitude and praised God for all of my blessings without a date on a calendar to remind me to take the time. It has not taken a special 24 hours to remind me how thankful I am for my family. I hit my knees almost daily and rejoice in the friendship that surrounds me and my family. Today, I will celebrate the fact that I do not need an exclusive day to be thankful that I found my best friend to walk through life's joys and its curve balls. I will embrace today and in its fullest.

This year I will celebrate the blessing of pain and uncertainty. For without them, I would not feel the magnitude of the good things that have been given. I will thank God for allowing me to feel the full realm of all emotions, so that I do not wade through a pond of stagnant water. The zeal of life is knocking on our door and it is knocking hard. I am thankful for the family and friends who choose to ride the hills, curves and loops of our roller coaster lives.

This year I 'get' how vital the journey is with my children. I understand to praise them and appreciate them. In the past I have been thankful for tangible possessions, but this year I am grateful for those things that are unseen. For Love, Kindness, Patience, Gratefulness, Friendship, Understanding, Forgiveness, Hope and Faith are the most valuable gifts that I can possibly possess.

This year I am thankful for the impact that one tiny little girl has made on so many lives. Much may seem to have been taken from her; however, she is the most gifted individual I am so exceedingly fortunate to know and love. She has touched so many lives in such a personal way. She alone has unlocked hearts that seemed to not possess a key. My dad has been impacted by her and she releases emotions from him that I never knew he owned. The man who raised me was a very rigid and often harsh man. He would not mind me telling you this, he knows it and admits it; he is not proud of it. He lead a hard life. Because of a sweet baby girl, my family can finally witness a side to my father that exudes love, a feat I thought was impossible to accomplish. She did it with one breath of life.

This year I am thankful that the bond between Matt and I is unwavering. It has been tested unlike the bond between many spouses. We have made it through the rapids. We know there will be more ahead, but we will endure them together. Our life together has not been easy - it has been full. It has been good. Hard times ensure us that good times trump and will always be even more gratifying. We are thankful for the small things. We are thankful to know that the minute moments are the grains of sand that form the pearls.

This year I am thankful to have a developed relationship with the Great Man in the sky. In the moments that faith has been tested, I have moved closer to God. He has stood before me and proclaimed that I would not walk through this life without knowing Him. I think that I was missing his importance. I was thankful for the good, not often thanking Him for those wonderful moments. Often, I questioned Him when times were tough. This year He taught me a life lesson. For all the moments in this past year when I made accusations of abandonment and questioned His intentions, He never left my side. He has lifted me up from a raging sea and along the way when life was unbearable, He reminded me He was there. Often He sent in Angels in the form of my friends, my mom, and at times there have been strangers (Father Peter). He has also provided me with support from others that are now walking through life with children like Ivey, who are impacting the world. For example, he has sent Ivey a friend, Addison. They have never met, but our families are enduring some of the same life altering experiences and we are all the better for our new take on Life. I am thankful for this Life God has provided.

This Thanksgiving Day we will celebrate our new 'normal'! I am not so sure the old normal was that good after all.

I am thankful that this year and all the years to follow we will be thankful for LIFE.

Happy Thanksgiving!

Gwen.

Father Peter

Father Peter: "Are you Catholic?"

Mom: "No, Episcopalian."

Father Peter: Shrugging his shoulders and smiling. "Close enough."


God definitely has a sense of humor and pretty good timing.
For this post I will refer back to my list among lists in my little notebook that I carry with me always.

Thursday, October 26th Pre-op for Day Surgery and Craniofacial appointment-

After a long day of registering Ivey for her surgery on her cleft lip, the only surgery officially scheduled at the time, it was time for dinner. We decided to take Ivey out-on-the-town for a little surgery celebration. Remember we are early birds; it was only 5:30 pm. After little haggling over restaurants, we (Matt) suggested that we eat at Matt's favorite restaurant, Bones. Who was I to disagree? It is delicious.

Ivey loved her night out. She celebrated by sleeping through the entire dinner. Seemingly, she knew when dessert was over, she started to stir and get a little fussy. Like two polite ladies, Ivey and I excused our selves from the table to wait at the door while we left Matt with the check.

As I walked to the door of the restaurant, this is the restaurant where Matt and I normally celebrate wedding anniversaries, emotions were running pretty high due to worries of the next day. Now, if you have ever been in Bones you can envision the setting. I looked to my left and seated at a table nestled in the corner just below the bar (I know every time I think of this I hear Reese Witherspoon and her line from Sweet Home Alabama saying - "You have a baby, in a BAR." No, we did not have Ivey in a bar; however, there is a bar in the restaurant.) was a priest still in collar, and get this, he was reading a Bible. By this time it was about 7:00 pm on a Thursday night. Exactly....what are the chances?

So I looked down at Ivey and said, "Okay, maybe this is our moment."

Ever so discretely Ivey and I eased ourselves over beside the table where the priest was sitting. I am not sure that he realized that he was on call that night, but he was about to find out. I took a deep breath, swallowed tears and interrupted him from his moment of solitude. We had a very brief conversation. In a nutshell, I quickly told him that my daughter was having surgery the next day. He asked her name. He then smiled down at her and touched her on her head.

What is amazing about the first instant and moments to follow my disruption into his evening,he did not flinch. He never seemed surprised for a strange woman and baby to walk straight up to him and ask for a quick prayer with them. I think that had I been in his shoes I probably would have thrown out a "Seriously?" Not one muscle twitched though.

I guess by now you know the punch line to this crazy scenario. That is right. The top of the page here says it all. But this really struck a cord. It did not matter who was coming to him - just why.

The most amazing blessing was spoken that night.

When I looked up, Matt was standing at the doorway with the most puzzled look. Pretty much, he thought I had lost my mind. Here lately Matt has been wondering when the last straw would come crashing down to break the camel's back. He thought that moment had happened some where between the check and the door! Can you imagine what the people right above us were viewing, or thought they saw? And yes, those above us were seated at the bar. They probably thought they were hallucinating.

The next morning as we were sitting 15 minutes into a surgery staring at a doctor who was only there to put tubes into Ivey's little ears, I thought about Father Peter. The doctor had pulled us from the waiting room into this small meeting room to ask permission to perform a tracheotomy on Ivey - immediately. I listened to Dr. Herrmann explain that Ivey could not be intubated for surgery because her airway was too restricted and at that point Ivey's lip repair might not be an option. Quote, "I am not asking you to perform the tracheotomy for the surgery today. I am asking you to save her life. If she were to have just a common cold, she will not survive. IT will kill her." We were left with no option.

Father Peter had left me with an email address. So I emailed him. He has been to visit Ivey several times during her stay at Scottish Rite. He is a wonderful man.

So I leave you with this. Think about it. Was Ivey truly blessed that night?
Was it a God Moment?

Gwen.

Sleeping Babies

Time with Ivey and two little boys has become more complex, more relaxing, full of fear and estatic with joy in just a short three weeks. And right this moment, all three are sleeping peacefully and there is a moment to sit and breathe.

I am here at the hospital with Ivey watching her sleep yet, still wishing that I could stand in the boys' doorway to watch them sleep.

Next week on the 25th, Ivey will be 7 months old. Officially, she will have spent 2 months of her 7 in a hospital. Each day that has passed in those two months, Knox and Walker have whole heartedly stepped through each day with her. Not a day has gone by that they lift their heads from their pillows, bare feet hitting the hardwoods and ask where is Ivey, where is Daddy? And instinctively they answer their own question - at Scot White with Ivey. And in return, Matt says the same is done on the days I am here with Ivey, except they ask about their Momma. Not a day has passed that I don't ask, not necessarily to anyone inparticular, why these babies should carry such heavy hearts and live years past their age.

Now the calendar is set that Ivey will go home sooner than later and life will take on a new meaning and a new schedule. In the days that are to come, I pray that they will be sleeping babies whom have sweet dreams and wakeup to an untarnished world.

I remember when Knox was first born, the first baby. For many, everything that I did with him was chalked up to being an inexperienced mom, a first time mom. I have always wondered exactly where in the formula do you stop being a first time mom and become an experienced mom? To me, being a mom for the first time or for the third does not make me a better mom. Multiple children does not dignify or qualify that I am a good mother.

Is it possible to stretch across the miles and ensure three tiny people that they are special and important, loved and respected, unique and beautiful? Will they see that they are all loved equally all in their own unique way of needing to be loved? Will my children rest peacefully at night and feel secure in their surroundings, no matter where they are? Will they always feel protected and safe, even in our world of uncertainty? These are questions that are not special to our circumstance. These are questions that most mothers and fathers ask of themselves.

Tonight I left the hospital and went to dinner - alone. My friend Mandy came here and sat with Ivey while I left the hospital. Solitude is a wonderful thing at times. The past three weeks have been full. The past three days have been filled with a very awake 6 month old and learning to address her new needs and how to operate her new equipment. Down time is very limited. Mastering new skills takes concentration, when we go home all eyes will look this way to know what to do. Tomorrow it is planned that I will begin the rooming-in process so that Ivey can come home. I must log in 24 approved hours. Then, Matt will log in his own separate 24 hours. So do not be alarmed if we do not answer phones and visiting is very limited. While rooming-in, the nurses and respiratory therapists will step back and we will be in control of all feedings, medications, therapies, trach care, PEG care and other day-to-day needs of a baby.

So, tonight as I sat alone at dinner, something that is very against my normal mode of comfort, I basked in the moment. I sat with thoughts and emotions in my mind and could actually think over what I should do with each. Initially my thoughts wondered to life in the next year. Exactly how tough will it be on all of us? Then I reminded myself to not go down a road we may or may not travel, be patient and let things happen on their own.

Then the picture became clear.

I was sitting enjoying time alone while a friend put time aside to travel to Atlanta to sit with my daughter, without me asking. Another friend took charge of my life, voluntarily, to help love my children, make life easier, without me asking. Another has scheduled meals for my family, without me asking, despite her own busy schedule. Another has provided a place for my family to stay while here in Atlanta and carpooled the boys to and from preschool, all without me asking. Another has become Ivey's family, caring for her just like a mother, without me ever asking. I have walked into my home on more than one occassion and found groceries when we have been in the hospital and shopping almost impossible, all without me asking. Others have traveled the road here for doctors appointments, without me asking. Our circle is infinite and full of love. No matter what is to come, our family will not go at it alone. We have a wonderful family, but I marvel at the family that chooses us, our friends. I have watched much different senarios from my seat here in the hospital. Tonight I found myself sitting wondering where in Life did I become so lucky?

I pray my babies will sleep well tonight. I pray they feel the love that is surrounding them across the miles from here and from their family of friends who have chosen to love them. So, I have answered my own concerns. A mother is only as strong as the friends she keeps. I am a good mother because of the women who choose to surround my family. My children will know the love I have for them because they witness, on a daily basis, the bond between friends. After a good night sleep, the sun will shine down on our children tomorrow and they will feel an unconditional love that can only be found amongst our friends, our family.

Hands of Friendship and Brotherly Love

It is said that a picture is worth a thousand words. Well, words can't describe these........

The Brave Little Soul

I just received this email from a friend. How it got to her, I am not sure, but she passed it on to me.

I will preface this email by telling you that Ivey has brought joy to many many many people. Her life has been a miracle, in so many infinite ways. = Hearts have opened, hearts have mended, friendships created, friendships renewed, a community united, priorities aligned, love established.-Yes,life is hard at times. And for me, I want Ivey's story told, all because I see that she is a Brave Little Soul. There isn't a relationship in my life that hasn't been made more valuable all because of Ivey. I will mention that everything is not always light hearted, my mom and husband normally endure the convergence of life, fear and reality and when I subcome to the three. Sometimes, life and reality merge and become too much. When I touch Ivey and my sons all fear disappears. But maybe, just maybe, the world is more compassionate all because of the presence of babies and children like our daughter.


A three year old little boy that attends St. Thomas Day School (Anna
>Kate attends the mother's morning out program there), was recently
>diagnosed with a malignant brain tumor. I became a frequent visitor on
>his care page to check his progress. On the web site,
>(www.carepages.com) I noticed a place that invites one to read other
>journals from "brave souls" who volunteer to share their journey with
>illness and hope. Feeling empathetic, I read every story. Even though I
>have never met any of these "brave souls", they have become a part of
>my life. I "check-in" on them periodically for updates, pray for each
>person daily and feel sorrow and hurt when they receive bad lab reports
>or have an especially hard day. I even called each person by name as I shared their story with Chris.
>
> As I tearfully told Chris about a nineteen year old boy that recently
> lost his battle with leukemia, and thought about the little boy at
> Anna Kate's school, and thought of my friend Sara, and thought of an
> acquaintance from Rome that delivered a baby girl with a chromosonal
> abnormality, and thought of all those people from the care page website,
I became angry.
> Why do children get cancer? Why must people suffer? Why are babies
> born with deformaties and abnormalities? Why? Why? Why? Why would a
> loving God allow such tragedy and suffering?
>
> Today, I got my answer through a poem posted in a care page journal by
> a mother of a little girl with leukemia. This poem is very
> inspirational. I hope you will read it.
>
> The Brave Little Soul
> By: John Alessi
>
> Not too long ago in Heaven there was a little soul who took wonder in
> observing the world. He especially enjoyed the love he saw there and
> often expressed this joy with God. One day however, the little soul
> was sad, for on this day he saw suffering in the world. He approached
> God and sadly asked, "Why do bad things happen, why is there suffering in the world?"
>
> God paused for a moment and replied, Little soul, do not be sad, for
> the suffering you see, unlocks the love in peoples hearts". The
> little soul was confused. "What do you mean", he asked. God replied,
> "Have you not noticed the goodness and love that is the offspring of that suffering?
> Look at how people come together, drop their differences, and show
> their love and compassion for those who suffer. All their other
> motivations disappear and they become motivated by love alone.
>
> The little soul began to understand and listened attentively as God
> continued, "The suffering soul unlocks the love in people's hearts
> like the sun and rain unlock the flower within the seed. I created
> everyone with endless love in their heart, but unfortunately most
> people keep it locked up and hardly share it with anyone. They are
> afraid to let their love shine freely, because they are afraid of
> being hurt. But a suffering soul unlocks that love. i tell you this-it is the greatest miracle of all.
> Many souls have bravely chosen to go into the world and suffer -to
> unlock the love-to create this miracle-for the good of all humanity.
>
> Just then the little soul got a wonderful idea and could hardly
> contain himself. With his wings fluttering, bouncing up and down, the
> little soul excitedly replied, "I am a brave; let me go! I would like
> to go into this world and suffer so that I can unlock the goodness and
> love in people's hearts! I want to create that miracle!"
>
> God smiled and said, "You are a brave soul I know, and thus I will
> grant your request. But even though you are very brave you will not be
> able to do this alone. I have known since the beginning of time that
> you would ask for this and so I have carefully selected many souls to
> care for you on your journey. Those souls will help you create your
> miracle; however they will also share in your suffering. Two of these
> souls are most special and will care for you, help you and suffer
> along with you, far beyond the others. They have already chosen a name for you.
>
> God and the brave little soul shared a smile, and then embraced. In
> parting, God said, "Do not forget little soul that I will be with you
> always. Although you have agreed to bear the pain, you will do so
> through my strength. And if the time should come when you feel that
> you have suffered enough, just say the word, think the thought, and
> you will be healed.
>
> Thus at that moment the brave little soul was born into the world, and
> through his suffering and God's strength he unlocked the goodness and
> love in people's hearts. For so many people dropped their differences
> and came together to show their love. Priorities became properly
> aligned. People gave from their hearts. Those that were always too
> busy found time. Many began new spiritual journeys-some regained lost
> faith-many came back to God. Parents hugged their children tighter.
> Friends and family grew closer. Old friends got together and new
> friendships were made. Distant family reunited, and every family spent
> more time together. Everyone prayed. Peace and love reigned. Lives were changed forever. it was good.
> the world was a better place. the miracle had happened. God was pleased.
>
>
>
> Isn't that AWESOME?
>
> Brenda
>
>

The three hour tour...The three hour tour...

This morning Ivey underwent another procedure. The GI doctor placed a PEG tube into the wall of her stomach. Now instead of having a ng tube (feeding tube) run through her nose into her stomach, her feedings will be supplied through the PEG tube directly into her stomach. After six months of tape on Ivey's face holding a feeding tube in place, she is FREE! No more tape, no more tubes, no more irritated skin, and one less object in her sweet face. This morning I watched her hook her right index finger under the tube and pull it out for the last time! Yeah. I just sat back, watching, and said, "Ivey, you get to do the honors."

She is sleeping now. Our nurse, Hannah, assures me she will not wake up happy, nor will she be for the next three days. On the bright side, we hope to have simplified Ivey's feedings.

Have you ever felt like your life were a TV script. If we had to choose one right this very moment it would be Gilligan's Island.

We have just been stranded on what we thought was just a three hour tour.....

Our, "Oh, typically cleft lip repairs require a one night stay, in Ivey's case maybe two" just extended itself. (I planned for three, to no avail.) How long? Not sure. I can tell you that Ivey's case manager here at Scottish Rite just left the room with the words Thanksgiving, no, home, during holidays, training, sleep-ins, and weeks. You can rearrange the words however you like. So time to decide, which cast away will I be? Considering I have one pair of jeans and three pairs of sweat pants packed, we can definitely rule out Ginger. You would never catch me in a pair of cut-offs and a shirt tied above my waist these days, nix Mary Ann. And at the exponential growth of our hospital bills, cancel out Lovey. To my despair the rest are men. Looks like the Sirmans' family is about to rewrite the script......

Just keep a look out for S.O.S signals

Signed,
The Castaways

TICU Tricks

As of this very moment, Ivey is doing well. She is back on her normal medications with a couple of new ones added to the batch. She is gradually adjusting to her new trach. When it comes to her feedings, she is still taking them via her feeding tube which runs through her nose to her stomach, something she has had since day 1, literally. And as we have come to accept, it is always one step forward about twenty steps back. Ivey is on a continual feed where the feeding pump runs continually for 5 hours; she rests for one hour, then it all starts over again. Somewhere in there a good case of reflux occurs. This is where the trach adds a little excitement to our normal routine. The trach must be suctioned, dressing and trach ties normally must be changed; and not to be forgotten, her bedding and clothes must also be changed, unless I am holding her, then we both need changing. All of this probably would not be quite so dramatic if not for the PIC line in her arm, something to be guarded at all costs and not pulled out, three leads connected to her for monitoring her heart, a pulse-ox monitor, and her perpetual feeding tube. However, she has gotten rid of her IV’s. Girls and their drama!

This is the moment where you think, “That poor baby!” DON’T! On more than one occasion Ivey has shown us that she has plenty of attitude. I would like to think of it is a little bit of sass, better known as being stubborn or strong-willed, with a tad of retaliation. I can't imagine where she gets that from???

She has found a way to drive the nurses crazy.

It gets to be down right comical at times.

Now that Ivey is no longer under the paralytic or sedatives, she can touch her face with her hands again. Ivey’s hands go straight for her conformers. That is right; she takes them out of her little eyes. You see, this is normal behavior for Ivey at home. She takes a conformer out; I put it right back. It’s almost like a game. You may remember in the beginning of our life as we were adjusting to her new conformers - TURMOIL. How would I ever place these enamel gadgets back into the place where her little eyes should be? Well, it does not faze anyone in this household anymore. So much so, that when I had her out to lunch with me the other week, she popped one out. I popped the conformer right back into her ‘eye’ sitting there at the restaurant table, only to look over at the table next to me with four sets of mortified eyes staring back at me in wonder of what I was doing to my child.

The view from their seat - mortifying.

The view from my seat - quite humorous.

Back to my point, Ivey is popping her conformers out left and right. Conformers are a new ballgame, even to these highly trained and skilled nurses. With the exception of a night nurse in PICU whose nephew was born with anophthalmia, no one has ever actually seen a case of anophthalmia. At best they have read about it. Ivey’s hands start sneaking up to her eyes and the nurses start trying to push her hands down; they have even attempted to put a set of cuffs on her arms that will not allow her to bend her arms to rub her eyes. Now as you can imagine this has not gone over so well with Mom here, I take the cuffs off the second they put them on. So, I have shown the nurses how to replace her conformers. Even they have a look of apprehension at the thought of replacing them; however, a couple of the nurses have almost seemed giddy that they might be so lucky to try something so new. Isn’t the saying ‘Don’t get mad, get even’? Ivey may not realize it, but she is really getting even for the necessary but uncomfortable procedures she has been enduring at the hands of the nurses.

This has been hard on us all. This has been especially tough on some who have had the opportunity to visit. We love you all.

Hope this made you smile.

TICU.....

I am learning all sorts of abbreviations these days. For example, TICU is the technology-dependant intensive care unit. Wednesday, the nurses and doctors put the word out that Ivey was heading there. Miranda and I sat trying to decide what the ‘T’ in 'tick-u' stood for. We concluded that it stood for ‘Temporary’, which sounded pretty optimistic to both of us. In my phone call to Matt to tell him the good news about Ivey’s move, he informed me of the correct meaning, technology-dependant.

What more could you expect from two blondes brain-storming anyways?

So…Ivey has moved one floor down - one floor closer to the exit of the hospital - to TICU, a step-down unit. She is no longer on the respirator. Our sweet baby girl is breathing all on her own through her new trach. Ivey is connected to a HTC, another abbreviation which stands for humidified trach collar. A hose extending from a humidifier to her trach supplies moisture to keep her airway from drying. Since she no longer breathes through her mouth this is necessary. Our mouths, which are pretty humid from saliva and body heat, are our humidifiers.

It is heartbreaking to watch Ivey adjust to her new trach. She no longer makes sound when she cries. Air does not pass across her vocal cords, thus, no sound. Ivey is confused and frustrated. She is learning how to breathe and cough - all things which are natural instinct to us. Ivey has dropped weight from 10 pounds back down to 8 pounds. Earlier in the week a doctor looked at me and said in a very sincere and comforting voice, “She is a fragile little thing”. All I could do was nod. Instinctively, I wanted to look him dead in the eye and tell him that she might just be one of the strongest people that either one of us have ever laid eyes upon in a nice petite package. But, from his voice, he already knew that. It is amazing to see her and know that she is fragile and susceptible to medical trivia; however, I constantly am amazed by her endurance and perseverance.

We have not taken the boys to see Ivey - yet. As open as we are with the boys, it is not time for them to see her. She needs adjustment time first. I do not think there would be a way to explain to them her response to this new trach. She needs plenty of time for recovery and no chance for infection from two tiny little germ carriers. Even so, we have been prepping the boys for the first visit with their baby sister. Knox is excited that she now has another ‘hole in her nose’ and her lip ‘fixed’ and he correlates my explanation of her ‘trach with a collar’ to a necklace.

Matt and I are grateful for everyone who has offered a helping hand and support throughout this past week. Finally, seven days have pasted since we set off for Scottish Rite for an easy lip/nose repair. It has felt like an eternity. We have been able to spend some time with family in Atlanta. Thank you to everyone who has sent a card or some type of goody. Encouragement is what we need right now. And on a lighter note, Matt and I have finally resolved that our cell phones are not working well in the hospital, probably due to interference from all of the equipment. After three days of Matt saying, “I have called you, left messages and you are not answering the phone”, which is very frustrating considering he can not just stop in to check on things, the same thing happened to him today while he stayed with Ivey. Once outside of the hospital, missed calls appear out of nowhere. Leave a message we will return our calls, that is if the mailbox is not full.

This great story of Life is unfolding before our very eyes. The apprehension of what is yet to be written is almost suffocating and then in a moment the fear is gone. Now a new chapter of this fairytale with our baby girl and sweet baby sister is unveiling its self. We just have to wait to see what she writes.

Much Love,

Gwen

Good Morning!

Ivey is doing well this morning. Yesterday, Ivey had her trach changed out for the first time. The paralytic was also stopped at this time.

She is beginning to move her arms, push with her legs and just wiggle around a little bit. She looks very pouty because she is rolling her lower lip out feeling that new upper lip. Last night she did take a pacifier. Her sweet personality is coming back.

The next few days will be interesting for her as she learns and accepts the trach and her new lip. She is still on the ventilator; however, she is not depending on it quite as much.

Keep Ivey in your prayers. Add to your list all the children in this hospital with Ivey, and their parents and siblings.
Gwen