Keller, TX ~ August 7th, 2010

Keller, TX ~ August 7th, 2010
The "eight of us" together w/ our NEW babies after our losses...

Living Proof ~ June 13th, 2009 ~ Pittsburgh, PA ~ Beth Moore

Deeper Still ~ June 28th, 2008

Deeper Still ~ June 28th, 2008
The "eight of us" w/ Beth Moore (w/ empty arms)...

Thursday, November 22, 2007


Colossians 3:14-16 (The Message)

12-14 So, chosen by God for this new life of love, dress in the wardrobe God picked out for you: compassion, kindness, humility, quiet strength, discipline. Be even-tempered, content with second place, quick to forgive an offense. Forgive as quickly and completely as the Master forgave you. And regardless of what else you put on, wear love. It's your basic, all-purpose garment. Never be without it.

15-17 Let the peace of Christ keep you in tune with each other, in step with each other. None of this going off and doing your own thing. And cultivate thankfulness. Let the Word of Christ—the Message—have the run of the house. Give it plenty of room in your lives. Instruct and direct one another using good common sense. And sing, sing your hearts out to God! Let every detail in your lives—words, actions, whatever—be done in the name of the Master, Jesus, thanking God the Father every step of the way.

Tuesday, November 20, 2007

Sunday, November 18, 2007

You must listen to this...

This is a tear jerker....And a heart warmer...

A remarkable phone call from a 12-yr old boy to Houston radio station KSBJ FM 89.3. So profound, the station has it posted on their website.

Click below to listen to it. It's short.

Here is the link to the morning show's webpage.

There you will find more info on Logan as well...

Thursday, November 15, 2007

A Gift of Time: Continuing your pregnancy with a terminal prenatal diagnosis...

A Gift of Time: Continuing your pregnancy with a terminal prenatal diagnosis

Receiving a terminal prenatal diagnosis means that your baby likely will die before or shortly after birth. This is devastating, shattering news. Because of recent advances in medical technology and prenatal testing, this kind of pregnancy crisis is relatively new. There is a great need for a sensitive, informative book that can support parents who decide to continue their pregnancy, and assist them through their baby's life and death. A Gift of Time will help fill that void.

A Gift of Time will document the wide variety of situations and emotions parents face, as well as provide practical suggestions for coping, decision-making, and meaningfully planning the time before the baby’s death. The book will also be filled with direct quotes from parents, who so eloquently describe their experiences, feelings, thoughts, and insights. By reading these stories, other parents can find much comfort in knowing that they are not alone.

If you already have traveled this path, we invite you to share your story and help light the path of parents who will come after you. We hope that you will find offering your experiences to other parents to be another way of honoring your baby.

To make your contribution to this project in writing, please download our questionnaire here. If you are in the Denver or Minneapolis-St. Paul metropolitan areas and would be willing to share your story with one of us in person, please contact us.

Home page

A few links that someone sent to me today...
It is an organization that deals with these types of situations and encourages carrying to term. They also send you a couple of free gifts like a lamb and a blanket. I even got a CD with this song that was written especially for parents like us.
I believe this baby had trisomy 18, but it has been a while since I looked. Her mom is awesome and I have e-mailed her more than a few times. She is a great resource and source of support.
I don't honestly remember exactly what this one is.
This has lots of stories and resources that you can search just by your diagnosis even though there are lots of other good ones to.

I belong to a group on yahoo called miracle angels which is a group for moms who have received a poor prenatal diagnosis. I know there are some trisomy moms on there and everyone on there is just really great.

National share foundation- they are a prenatal loss support organization that operates in hospitals across the country and they have some great things on their website.

Wednesday, November 14, 2007

Email I received tonight from a mother of a living Trisomy child...

After reading this email from a mother of a Trisomy case, whose daughter is STILL alive, gives me even more hope than I already had. I will say that I "accepted" the diagnosis for the first two days after hearing it...but from then on I completely put my faith in God. He created this baby girl and he only creates the most perfect, beautiful things. His word is the truth and I believe His word!

She CAN and WILL be healed...and I will stand on that.

Hebrews 11 says it all...

Isaiah 53:5 (New International Version)
5 But he was pierced for our transgressions, he was crushed for our iniquities; the punishment that brought us peace was upon him, and by his wounds we are healed.

Romans 10:11 (The Message)
11-13 Scripture reassures us, "No one who trusts God like this—heart and soul—will ever regret it." It's exactly the same no matter what a person's religious background may be: the same God for all of us, acting the same incredibly generous way to everyone who calls out for help. "Everyone who calls, 'Help, God!' gets help."

Psalm 112:7 (New International Version)
7 He will have no fear of bad news; his heart is steadfast, trusting in the LORD.

Chrissy, Hey, my little girl we were told from ultrasound probably has Trisomy 13 or 18 ... more likely 13. She had FOUR holes in her heart (probably all closed by now, through prayer and supporting her inability to feed enough by getting her a tube, so she had enough nutrition to allow those holes to close), she had (has? ... I don't notice stuff like that anymore) the rocker bottom feet you spoke of, and other things. Like hydrocephalus, spina bifida, cleft lip & palate.

I will tell you today that NO one can tell you who will and will not live. I walked into that delivery room with no hope. I want you to have hope. No one knows what will happen, and yes, sometimes babies have major organ involvement (hearts that are very "wrong," for instance), and they have a tougher time continuing alive. But no one can honestly say Trisomy 18 or 13 is "lethal" or "incompatible with life." If so, then how are so many living?

And I "got" your comment about it not being too much to ask God for just one or 2 things. One thing I learned was my limited trust (I got to the point that I only asked that her back would not burst) ... was an immature thing (for me, not you). Like my kids do, they don't ask for everything if there is something they REALLY want ... they save it all up for the big stuff sometimes, thinking we'll be more apt to give what they want. My dealing with God like that revealed something to me...especially when she was born alive and screaming, but the sac on her back burst. I was devastated and didn't speak about it for 24 hrs...till I got to tell the OB what I was thinking. She knew the deal ... we made our birth plan, and I told her I would not cope with that one thing happening. She was able to share with me how it didn't change her need for surgery, and several other things ... and that God was still in control.

About a month later I had a realization ... yes, it was important for me to pray for WHATEVER I wanted, and God wasn't going to "punish" me for my limited faith. It just allowed me to see my thoughts about Him. But the way He answered my prayer by giving me NOT what I asked for ... but for everything else, the things I did not dare to ask for ... showed me something about His desire to give us all good things. And only He knows what is our "best" things.

I know I don't explain it well ... clearly you can imagine that to me, "best" would always involve M being alive and thriving with us. But I know now that even being allowed to mother a baby that God knew at the moment He created her, was only meant to be here a short time, would be something I'd want. If He was that clear with me ... would I be willing to bring that baby safely here, not abort, not settle for early induction (to get things over with), not stop watching what I ate, drank, etc. .... and welcome that baby with the joy and love my family can give, would I do it? YES. I would not want that baby to miss out on the chance to be welcomed and loved and blessed along her way.

Anyway, I am praying for you. I work outside the home (a nurse) so I don't have really the time to read your entire blog. I am so proud of you for choosing to love your baby as she is. You will never ever regret opening your heart in this way, even though I know it feels terrifying to hope and risk having your hopes dashed. But do not let go of hope.

By the way, I had a crazy thought that I was so worried they would treat things at birth only based on a diagnosis, and that people would only look at M as "that baby in room 360 with trisomy ....." that we eventually refused genetic testing. But our daughter went to a children's hospital for back surgery and stayed almost 2 months - the back had to heal, and then we decided we wanted a tube in her tummy so the one in her mouth that was making her gag & stop wanting to suck could be taken out, so that extended it a little bit. In that time, although the first month's doctor group threatened us about the testing (they said the surgeons needed to know what she had so they could decide what they were willing to do!!) ... they eventually decided to see if caffeine helped her apnea. It was a turning point for her, because they were telling us all along that the apnea is what she would die of. But I can tell you now, that apnea is not dying. And the heart slowing when the oxygen level goes down (because of apnea) is a normal event, not another sign that the baby is dying. It is a very strange thing, to realize that all those reports of "3 apnea and bradycardia (heart slowing) episodes this shift, and 2 last night," was not the same thing as telling us "she died 3 times this shift and twice last night." We now know that when M starts having apnea again, we need to get a caffeine blood level (a heel stick for a simple blood test) and will find the caffeine level to be low, .. the pediatrician will increase the dose .. and the apnea will be under control again. We do have a pulse oximeter (shows oxygen level and heart rate) instead of an apnea monitor because the apnea monitor did NOT show us anything we needed to know, to safely monitor her. And all the things we needed to learn to take care of her (and yes, I was terrified I couldn't do it sometimes ... nurse or not) ... even our 7 yr old has been able to learn. He can do all except measure out her meds ... the others can all do tube feedings, measure meds (in front of us, and we check the measurements), watch her for apnea, etc. Of course, they are never alone with her, but still ... the parts that you think you cannot handle, you will learn are a piece of cake, and you will develop your own routine about them.

So do not be afraid. Remember, hope (no one knows the number of our days but God), caffeine & pulse ox, and there ARE specialists who will do what your baby needs with NO issues about her diagnosis. You are VERY wise to be looking and planning ahead like this.

Email me any time, if you want. I loved what I read of what you wrote - I am so private, so I am impressed by those of you who are brave enough to be so transparent, because you are not only able to connect with others who can share your experiences, but you also give hope to others, and teach us all as you share what you are learning. I am convinced that we grow the most during times like this. Mine seemed like the longest pregnancy in the world, but now I'm glad I had all that time to grow and learn what God had for me to learn, even though I cried so much.


Ultrasound (CCAC)

Cyst on brain

Arrow pointing to eye

Hand & Fingers

Arms & Hands

Hands & Arms - Knees & Legs

Face, Body, Heart

Profile, Hand, Leg, Foot



Hand at mouth

Sucking her thumb



Head, Body, Heart

Fingers, Hand, Arm, Face

Cord Blood Flow

Thursday, November 8, 2007

Yesterdays Appointment

Okay…the findings from yesterdays appointment…

From our understanding the things that were found are minimal, not great and it certainly doesn't mean that we're able to rest assured but they could have definitely been worse. I'll take that as answered prayers!

The things found consist of Eva having a strawberry shaped head (Strawberry-Shaped Head : Many children with trisomies have unusually shaped skulls. The shape of the skull in and of itself does not denote any underlying problem).

Her hands appear clenched with the third and fourth fingers overlapping each other and/or may be fused together. (Clenched fists : A characteristic sign of trisomy 18 is the clenching of one or both hands, with the second finger overlapping the third and the fifth finger overlapping the fourth).

Her feet appear to be flat and "rocker bottom" (Rocker-Bottom Feet : A misformed foot shape. Can be corrected with manipulation and casting, or aided by corrective braces).

She has a cyst on her brain (Choroid Plexus Cysts : A cyst (or pocket of fluid) located on the brain. Although this can be a marker of a chromosomal abnormality, it is not, in and of itself, a guarantee of the condition). The doctor assured us that this cyst will dissolve before birth.

She has a small VSD (Ventricular Septal Defect : A hole between the lower chambers of the heart which prevents the heart from pumping blood correctly; a heart murmur is generally heard with this congenital defect) but the doctor made it seem like this was very minor.

I guess the major thing found was an excess amount of amniotic fluid. I am measuring 19 weeks from the outside but that is because of the amount of fluid on the inside. Eva's body is measuring a little over 17 weeks and her head a little over 18 (meaning that the extra fluid makes up for the rest of her that isn't measuring quite up to date).

Trisomy 18 causes the brainstem to not develop as it normally would resulting in defects that hinder swallowing, which can prohibit ingestion of the amniotic fluid, resulting in a build up of fluid. (Brainstem (located at the top of the spinal cord near the neck) is the most highly developed area of the brain at birth (in a normal baby). It controls all inborn reflexes such as crying, startling and suckling, and it regulates basic life functions such as breathing, blood pressure, heart rate and REM (Rapid Eye Movement) sleep). The doctor stated that due to the higher levels of fluid I could experience preterm labor. When I asked how preterm are we talking he said anywhere from 28-34 weeks. THIS CANNOT HAPPEN!

Therefore, after these findings I have changed my prayers. I am not necessarily praying for the complete and total healing (because I feel that He has indeed healed her in many ways already) but now for the specifics.

A. The closing of the hole in her heart or for it to remain small and not have any major issues pumping the blood to the right place.

B. The fluid to balance out and not increase so fast and for her sucking and swallowing abilities to improve.

C. To make it beyond 34 weeks and as long as possible w/ her heart still trucking along strong.

Now that's not too much to ask of God, right?"

Don't bargain w/ God. Be direct. Ask for what you need. This is not a cat-and-mouse, hide-and-seek game we're in. If your little boy asks for a serving of fish, do you scare him w/ a live snake on his plate? If your little girl asks for an egg, do you trick her w/ a spider? As bad as you are, you wouldn't think of such a thing--you're at least decent to your own children. And don't you think the Father who conceived you in love will give the Holy Spirit when you ask him?" - The Message//Remix Bible

I have an appointment w/ a pediatric cardiologist for a fetal echocardiogram on Monday, November 26th, followed by a prenatal appointment and another ultrasound. I will then be scheduling an appointment w/ the neonatologist to discuss and prepare a birth plan for Eva after delivery. A birth plan for labor and delivery will be discuss and prepared w/ the OB doctor as well.

Lot's of things to come! I have volunteered to CCAC, as well as the Western School of Health and Business, to have their students perform ultrasound on me to educate their students on Trisomy 18 and to know what to look for. They have never had anyone call them and volunteer w/ such case and were very happy and grateful that I am willing and wanting to come in.

After speaking to a girl last weekend who had 4 ultrasounds w/ her last pregnancy and nothing was ever detected that her unborn son had Trisomy 13 (his heart was backwards w/ a large hole in it, he had 2 fingers on one hand and 6 on the other and was on life support for 4 days before making a heartbreaking decision). Had they have known something, anything prior to the time of delivery maybe something could have been done. Instead they had to explain the loss of the baby to their 2 other daughters as well as go home empty handed to a nursery that was already set up. I feel the need to do whatever I can for mothers like myself to be aware of such problems as early as possible. Not because of the termination factor but because the earlier something like this is detected the more time parents have to become educated, as well as to prepare themselves physically, mentally, emotionally and maybe even financially.

Please continue to pray for us and baby Eva.

I know that God hears all of our prayers!

Love, Chrissy

Wednesday, November 7, 2007

Ultrasound (AGH)

19 weeks


Head & Body

Legs & Feet


Hand on Knee

Is she sucking her thumb or picking her nose?



Blocking her face
Hand at her mouth
Hand at her mouth
Is that her Guardian Angel touching her nose?

Tuesday, November 6, 2007

Her name has been chosen

Her name has been chosen...


EVA = life; living one...

JANETTE = God is Gracious...

And after Vinnie's Mom Janet and his friend EJ
(both of which he lost several years ago)