Repeating Facebook Status on Blog.....

There is a group of women (and a few valiant men) that I am proud to call my friends. Most of them I have never met. The few I have met reaffirm my knowledge that this entire group of families are the best and most special people in the entire world! They are courageous, loving, kind, and brave. They are the parents and loved ones of our beautiful Hydranencephaly children. And our entire support group is suffering right now. We all love each other very much. Please keep the Global Hydranencephaly Family to Family Resource Group in your prayers this day and in the coming weeks. Our prayer list right now includes:
- The Nevil Family, who lost their precious daughter Savannah yesterday. The third child and second with Hydranencephaly they have lost in the last 16 months!
- The Brennan Family, who are sitting at the bedside of their precious daughter Holly, while she spends her last hours on earth.
- The Garcia Family, who stand vigil by their beautiful son, Andrew, who will also be joining the angels sometime today.
- The King Family, who suffered the loss of their darling son Noah a few months ago, and have now lost their husband/daddy Aaron to a massive heart attack.
- The Caroll Family, who are praying the Iron Lung will prove to be the solution to their little baby Ry's breathing issues.
- The Thompson Family, struggling with sweet Junior in the hospital.
- The White Family, who's precious daughter Kyana, just had surgery at TCH this week.
- The Mason Family, who is praying and hoping Sophia will rally from her CSF infection, hospitalized at TCH in Houston
SO much heartache, so much love and sadness....Please pray for all our families dealing with loss, illness and fear. Each time we lose a child, all the families shed tears and also experience profound fear for those children we have left. Our ^angel^ families often find themselves reliving their own child's passing. This week has been especially trying and my heart breaks for each and every one of our families. I know Heavenly Father loves us and loves our children. Thank God for Faith!

Where do I begin?

What a week it has been. And not in a good way!  Dear Sophia Faith was home for all of about 14 hours before we were back at the ER with her. She apparently had a shunt infection that started before we were even released from Texas Children's Hospital, but wasn't caught before they let us go home!
She cam home last Thursday and we arrived at the house about 1:30 in the afternoon. It was so good to have her home and the kids were so excited to have her here. Chrissy couldn't stop smiling every time she heard Sophia cry, and Stephen was so happy when he came home from school and she was here. He got to feed her a bottle and sit and cuddle with her. He is such a loving big brother!
She did well for her 6 pm, 9 pm, and midnight feedings. Took all her volume by bottle and I didn't even have to use her ng tube at all!  Then, about 3 am Friday morning, when she woke for her feeding, she seemed very fussy and irritable. She did not want her bottle, and wouldn't tolerate her tube feeding either. She was making a little moaning sound that broke my heart. I sat up with her in the rocking chair and just held her and patted her back til she finally fell back asleep. At 6 am, we were up again, and she still wouldn't take her bottle and she seemed too lethargic to me. I called our pediatrician's office right at 7 am, and they had me bring her in as soon as they opened at 8 am! We were able to see our pediatrician, Dr. Pope, who is wonderful with all my special kiddos!  He looked Sophie over and agreed with my fears that it looked like her shunt was getting infected. I knew it! It was what I suspected from the beginning.
So, back to Texas Children's we went - arrived at the emergency room about 9:30 am Friday morning.  They were pretty quick to get her CT Scan and Shunt series (x-rays) done. All looked normal, but by this time her fontanel was starting to bulge from fluid build up and her eyes were doing that typical "sundowning" that is so common with shunt malfunction. Neurosurgery was called and Dr. Dauser arrived about noon to tap her shunt. He took CSF fluid out and ordered lab work stat. Stat in the emergency room means within a few hours (unfortunately)! So it was sit and wait time. In the meanwhile, Sophie's heart rate was climbing and her respirations were also very high. The emergency room attending physician was very worried and started asking me what we wanted to do should she stop breathing! Yikes! THAT was a scary question!
And why did they even ask?  Because Sophia Faith has Hydranencephaly. So, of course, the question is always asked "do you want to treat her?"  "does she have a DNR?"   "don't you want to just let her go home and have nature take it's course"? 
It is an ongoing struggle for parents of children with Hydranencephaly to get treatment for our kids. Too many doctors still read the one or two paragraphs in a medical textbook about Hydranencephaly and decide our children will have "no quality of life" and they are "terminal". So the question always gets asked. And even when it is answered, it often gets asked again and again and again! It is very frustrating.
Sophia has an infection. If a "normal" child has an infection they are treated. Heck, even a child with other disabilities gets treatment for an infection! So, why do we have to constantly defend our decision to get treatment for our children?
Because the doctor's were so worried that Sophia was declining in the ER, I called birth mom and her mother to come up to the hospital. I felt they should be there if anything went downhill with Sophia Faith or if indeed there were hard decisions to be made. They came right away. Kevin also started up to the hospital.
I talked to Dr. Dauser, and we decided that we would treat Sophia's infection. The treatment would begin with her going back into surgery to have the infected shunt removed. She would then need an external drain (EVD) to keep the excess cerebral spinal fluid at the proper level in her ventricles. She would probably be on antibiotics for 3 to 4 weeks and then a new shunt will be placed. All was decided and once birth mom  got to the ER, we all went upstairs to the surgery suite to prepare for surgery.
It was then that we were forced to endure a HORRIBLE hour long lecture on why we should let our daughter go home to die! Yes,  you heard right!  We had an anesthesiologist (call me for the doctor's name, for those of you who would like to avoid this person in the future) come into our room and actually LECTURE us on futility of care and how he and his wife (a pediatrician) often had discussions on the futile care and the money it cost to provide such care. He pulled up Sophie's CT scan images and proceeded to screech and lecture about her brain being missing and didn't we UNDERSTAND it would not grow back?!?  Didn't we understand she would be intubated for surgery and would never come off the ventilator! When we explained calmly that we did indeed understand all about Hydranencephaly and that we had a daughter who has hydranencephaly, who is now eleven years old, and that we wanted Sophia treated as we had had Chrissy treated in the past, this guy just would not take no for an answer and proceeded to try and pressure birth mom into saying she did not want Sophie treated!  INCREDIBLE!  But I was so proud of birth mom. She stood firm and looked him right in the eyes and said "I want my daughter treated".
Sophie went into surgery about 5:30 pm and was then transferred back up to the NICU, same bed she was in before being released on Thursday. Which was great because we got the same neonatologist and the same team we had before. We love the neonatologist, Dr. George Mandy. He is just wonderful. So patient and caring, and is willing to do the very best for Sophia Faith. And of course, as I expected, she was extubated the following morning with NO PROBLEMS! So much for never coming off the ventilator!

  Sophia has improved somewhat since Friday. She has better color, her blood count is up and the infection has cleared from her blood. She is tolerating her feedings and has not lost weight. But her CSF is still carrying a bad infection and so far the antibiotics are not helping. So today, she received her first intraventricular injection of antibiotics. She is getting her antibiotics directly into her CSF fluid (directly into the ventricles of her brain). The hope is that this will jump start the clearing of the infection in her head and spinal cord. She is still very sick. But she is fighting and trying so hard to be alert and active. The last two days she has been very irritable and fussy, so she has had to have either Chloral Hydrate or Morphine, to settle her down and help her rest.  We can use your prayers, friends!
We so want to bring dear Sophia Faith home! And keep her at home this time!!  She is such a sweetie!

 Tomorrow I will write about the rest of our week and why it was such a hard one! I have many friends in dire need of prayers this week. Praying Heavenly Father stays close to them and to us, as we all face the trials that are upon our families at this time!

Coming Home Soon!

Little Sophie will be coming home on Monday the 16th of January! She is doing well in NICU, despite having some endocrine problems. She has DI (Diabetes Insipidus) and will be coming home with a prescription for DDAVP, which will regulate her sodium levels. Her shunt site is healing well and she looks great! She is just a little fiesty girl! Very active and alert. But so content to just lay in your arms and look up at you! Can't wait to get her home so everyone can enjoy her!!  She is a doll!! 

Birthdays and Angel-versaries (Faith and Hope)

December 26, 2011. Eleven years. Our sweet Christina Ann has celebrated her eleventh birthday!

 Eleven years ago, on December 29, 2000, Kevin and I drove to Temple, Texas to the NICU at Scott and White Hospital, and met our sweet baby girl, Chrissy, for the first time. We heard the doctor tell us that she would die. Soon. Within weeks. She might not even make the three hour trip home to Houston. But despite the doom and gloom, we heard a much louder voice. We heard the voice of our Heavenly Father. And He told us to bring this baby home, love her, and make her a part of our forever family. Who were we to argue?  He had given us everything. He gave us a healthy baby boy and a healthy baby girl, who were the lights of our lives. Andrew was 12 years old, and Katie was 8 years old at that time. Sitting down with the two of them and explaining about this little baby who might come home to us and then die, was a hard thing to do. But they just seemed to understand. Perhaps Heavenly Father's voice spoke to them too. They accepted Chrissy and more importantly, they loved her! For all they were worth, they loved her. Especially Katie, who held and cuddled and loved and loved and loved. Katie probably, more than anybody, loved little Chrissy to LIFE. To this day, Chrissy loves her big sister Katie so much! I don't know if I ever told my kids how much I appreciated them and how much it meant to me, their mother, that they could accept a sibling with special needs and just make her a part of our life without a question or a hesitation! I was and am SO proud of them for their faith and love. 

And now, here we are, ELEVEN years later! I cannot believe how time has gone by so fast. I cannot believe how much Chrissy changed our lives for the better and made us so much more loving and accepting. She opened our hearts to so many possibilities that never existed in our minds before she came. Because of her and her joyous spirit, we have adopted more special needs children. Our lives have been blessed beyond imagining! 

I wrote a poem for Chrissy, back when she was tiny.  I found it in her scrapbook this morning.....I would like to share it here.

God sent an Angel to us

To Stay a Little While....

A Pure and Precious Spirit

A Beautiful Little Child

God Said She Would be Special

Her Heart is Full of Love

Her Eyes Speak of the Warmth

She Brought From Heaven Above

Her Hands are Soft and Gentle

Her Smile Worth More than Gold

One Tender Glance in Your Direction

Gives a Glimpse of the Worth of Her Soul.

How We Love this Precious Angel

How Sweet this Little Child

We Thank Thee for Thy Goodness and Mercy

We Thank Thee for Her Smiles

God Has Surely Blessed Us Greatly

To Share this Gift so Rare

This Pure and Precious Spirit

He has Given from His Care

God, Help Us to Be Worthy

To have her with us Here

That We can make Her Happy

That She will Know No Fear

God, Bless us with the insight

To know just what She needs

To Love Her and to Teach Her

as Her Journey on Earth Proceeds

God, we are so Grateful

in our Family You Placed this Child

For She Shows Us Daily

The Strength of the Meek and Mild.

We Promise to Love Her Greatly

We Promise to Care for Her Well

We promise to Treat Her Gently

In Our Diligence We Will Not Fail.

And When it is Time for Her to Return

to Thy Loving Arms Above

We Promise we will Try to be Ready

To Give Her Back with Our Hearts Full of Love.

Reading those words again, after all these years, has brought home to my heart how much we loved Chrissy then, and how much we love her now. In the years since Chrissy's birth we have also adopted Stephen, in 2002,who is now nine years old, and then adopted our Emily in 2005.  Another precious, sweet spirit, our Emily was brave and strong and true. She was such a breath of fresh air in our lives, and she was so very loved by Chrissy and Stephen, as well as by Andrew, Dana and Katie. Preparing for the return of Chrissy to our Heavenly Father was a pre-occupation of mine, and I worried that I would not be able to "Give Her Back with my Heart Full of Love" when the time came.  

Heavenly Father had a great and awesome, and HARD lesson for me to learn. He had to teach me that it is His Will, Not Mine that is to be done.  On January 3, 2010, I had to learn that lesson. I had to learn it, and then somehow manage to survive it.  For on January 3, 2010, I lost not my Chrissy, but instead my baby Emily was called home. In a horrible, tragic drowning accident, my little light Emily was taken from me and flew away Home to Heavenly Father. She was four years old. I hardly had her for any earthly time at all......and I was NOT ready to let her go! To this day, tears flow frequently, and my heart hurts daily with the loss of Emily. I would gladly die myself to have her here on earth again, bringing her smile and laughter and love to her siblings and daddy. 

But I cannot change God's plan. And I should not. I understand that. Though it hurts like hell, I do understand it.  And I am able to find solace in the fact that I know Emily is with the Lord and is doing important work in Heaven. I am comforted by Chrissy also. I somehow, deep in my heart, understand also that SHE has elected to stay on this earth with all of her disabilities and challenges, so that SHE can comfort her Momma! She is my rock and my fortress. I love her so much! And now my Heart is Full of Love. Because I see her struggles, her love, her courage on a daily basis. Eleven years later, NOW I can say that should Heavenly Father call her Home, I CAN give her back with that Heart Full of Love. My goodness, it would be the LEAST I could do for all she has given me! To know that she was back in Her Heavenly Father's arms, well and healthy and whole, would be the greatest blessing I could ever ask for (for me and for her). 

Of course, I do not think that she will go tomorrow or the next day or the next! I pray for at least ELEVEN MORE YEARS with her! But I know that Heavenly Father loves her and loves me and He will continue to do so for our life times and for our eternities! I am so thankful for that testimony. It has been a long time in the making.    

So, a Birthday on Dec 26th. ELEVEN WONDERFUL YEARS.  Then, an Angel-versary on Jan 3rd. TWO LONG PAINFUL YEARS. Oh, my heart. It struggles with the joy and pain. But a broken heart still beats. It does. It is a different beat. Sometimes weaker, and sometimes stronger. But it is there just the same.  

Three months ago, we were blessed with our little Joshua. He had just barely turned two years old when we brought him home. The blessings of adoption brought forth again for us. Such a treasure, such a comfort, and such a sweet little man ! He is another joyful, happy, spirit. He is blessing our family in many ways already! We are so happy to have him with us now. SO happy that Heavenly Father saw fit to send us our little man! We felt right away that Joshua was meant to be ours. And he has adjusted so well, and loves us as much as we love him. His smiles light my heart! When he says"Mama!" it just makes my love swell!  And he is pretty darn cute too!! 

How can we possibly be any more blessed than we are?  I am finding that it is possible!!  Heavenly Father works in mysterious ways and He is ALWAYS working!  

From the high of Chrissy's birthday on Dec 26th, to the impending low of Emily's Angelversary on Jan 3rd, all the days in between, I found myself wondering how on earth I could go from such joy to such heartache in the space of a few days. There I was, getting all pre-occupied again, with my own thoughts and my own ideas of how things should go.....I found myself pondering my faith and praying for hope in my heart. Hope that I would see my Emily again one day. Hope that Chrissy would stay with us a few more years. And praying hard for the Faith to believe it would be so.

I suppose Heavenly Father got a little tired of me and all my preoccupation. So He decided to give me a whole other thing to PONDER on!  

On December 29, 2011 (yes, just last Thursday), a little baby girl was born here in Houston. She was born with the same condition that Chrissy has. Eleven years almost to the day, here was this little lady with Hydranencephaly. Born and to be placed for adoption. No family to take her. And a birth mother who wanted only the best for her, but is unable to care for her with all her special needs.  No one knew if the baby would even live through her birth. The doctors sure didn't think so. But her birth mother had Faith. Her birth mother gave her a chance!  And she made it! 

As Heavenly Father probably knew all along, she was meant to make it. And I am so thankful to say that Heavenly Father is blessing our family once again, as we are going to be bringing this beautiful baby girl home soon! We have been with her since last Friday. She has gotten her VP Shunt surgery and is doing very well. I have spent many hours at the hospital this week. Her sweet birth mother named her Faith, and with her permission, we have added the name Sophia. So she will be Sophia Faith.  We are thrilled and honored to have been chosen to care for this special, special little girl. Only Heavenly Father knows how long she will be with us. But we hope it will be for a long while!  

Chrissy is over the moon excited!  

So are Stephen and Joshua! (Josh is not quite sure about sharing attention though! LOL)

We are truly thankful this week. I am especially thankful that the Lord saw fit to find me worthy to take care of another of his very special angels. And I was so happy this week, to be able to literally FEEL the presence of my Emily's spirit around me and around Sophie, as we cared for her at the hospital. I have no doubt that my angel Emily girl is watching out for her new baby sister and that she is happy we are taking Sophie into our family. I have no doubt in my heart at all that Families are Forever - eternal units brought together by Heavenly Father. I am thankful for Andrew, Katie, Chrissy, Stephen, Emily, Joshua and Sophie. I am thankful for my husband, Kevin, who has a strong testimony of our Faith and our calling as adoptive parents.   I am just thankful! 

Tired, but THANKFUL!!  

And I have to add......thankful we are done! LOL  Sophie is the last little angel for us!!  She is gonna be one spoiled little baby girl!!!!

                                             THANK YOU HEAVENLY FATHER!!!!