Life with Coco and Gigi... and Jack-Jack too!

Life as a Mom, A Homesteader, A Blogger and A Wife.

Todays Appointment

We are back from the hospital and things did not go very well today. We got a lot of info, so this will be a quick run-down, I am not feeling all that up to it. It turns out that Baby A has what they believe to be a birth defect. She has dilation between the 3rd and 4th ventricle. That is called Aqueductal Stenosis. She has small cerebellum lobes, which may be either the cause of or the effect of the overall problem. She also Ventriculomegoly, which is dilation of one of the ventricles. It should be less than 10mm and it is about 13mm.

The prognosis is not great, but very cloudy. The peri said it could be anything from developmental delays to more severe cognitive deficits. We got to the OB tomorrow, the peri in 4 weeks for another u/s. After that we will go to Children's Hospital in Philly for an MRI and to eventually meet with the neurologist and a pediatric neurosurgeon.

We are obviously at a complete loss right now. We have so much information, yet so very little. Termination is not an option, so we just have to wait and see how things will progress. I'll probably be absent for a while, but your prayers are very needed right now. I am a little angry at God, so it might help if others pick up some of my slack.

12 comments:

Tara 5:27 PM  

I don't know what any of it means, and it doesn't seem fair. You, your husband, and your girls are in my thoughts. I hope it's something that is treatable upon birth.

Nichole 5:31 PM  

Oh Kristen... I am so sorry to hear about Baby A... My eyes are full of tears... Did the peri say that it is something that can resolve as Baby A develops more? What is the accuracy of being able to tell the absolute prognosis from a sonogram? I often wonder why bad things happen to such good, deserving people (who obviously want a baby more than anything)... I've often heard the saying that "He wouldn't give you more than you can handle"... You've come this far and have been so strong... I'm sorry that you're going through this right now... I'm definitely praying for you!

MichelleL 6:17 PM  

Wanted to add in my support. I am very sorry to hear this news and do send you the strength to get through this.

darch 6:29 PM  

Sorry to read about your appointment. You are in my thoughts.

Mandy 6:58 PM  

Sweetie, I don't know what to say right now. I'm so very sorry that Baby A has this prognosis and it certainly doesn't seem fair at all. I wish there was something more that I could say/do.

((hugs))

OHN 8:42 PM  

Please don't lose hope...these little ones can do amazing things before they are born. A close friend had bad news on ultrasound and her son was born a perfect little guy..no explanation, it just happened. You are in my thoughts.

Jen 9:25 PM  

I'm so sorry for this news Kristen, my heart is breaking for you and baby A right now, it must be so much to take in especially with so many medical terms that are so complicated, i am going to pray for you all and believe in miracles, they happen every day (((((((hugs))))))

seattlegal 12:33 AM  

This just doesn't seem fair at all. You, your husband and your babies are in my prayers.

Truck Driver Wife 9:47 AM  

I am so sorry to hear the sad news. I don't think being angry right now is a good thing. Perhaps it will correct itself before the babys are born. Perhaps this is just a trial in your road right now.

This is where god wanted you to be. For every thing there is a reason.

I am praying for your and your babies thru tears right now. Sending Hugs and prayers your way.

Jaime 9:56 AM  

I am a L&D nurse and just a 2 nights ago, I had a patient deliver who's baby had the same diagnosis. She was followed closely through her pregnancy, and almost everything had resolved before birth. I hope the same happens for your baby girl.

Pange 10:42 AM  

Awww Kristen, I'm so sorry that you got bad news about sweet Baby Girl A. I'm hoping and praying that things will resolve before she is born and that you'll have the strength to get through this. You know, that's the great thing about God. He understands our human emotions and is big enough to handle our anger. And when we're done being angry He loves us enough to welcome us back to Him.

My mom told me once that God cries with us every tear we cry. It helped me and I'm hoping it helps you to hear that.

{{{hugs}}}

WendyLou 2:59 PM  

Kristen,

I'm so very sorry for Baby A's diagnosis and for the emotional stress and worry you are under.

It just sucks, really sucks. Sucks like a Dyson.

I wish I had the words to make this all better, but I don't.

I know about being angry at God. I've been so mad at Him when we were dealing with the concerns with my pregnancy.

Thing I learned is that He still loves you, even when you are mad at Him. He is still there for you, even when you just can't take this. You, baby girls A&B and your husband are all in my prayers.

One quote which has been a very comforting one to me is:

'I said to the man who stood at the Gate of the Year, "Give me a light that I may tread safely into the unknown." And he replied, "Go out into the darkness, and put your hand into the Hand of God. That shall be to you better than light, and safer than a known way."'
King George IV 1939

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Over 8 years we have struggled through 3 IUI's, 6 rounds of IVF, several RE's, hundreds of appointments and the loss of three little angels. Now we find ourselves the proud parents of two perfect little girls and a wonderful little boy!!

Both of our girls struggle with some disabilities but that won't keep us down. Each day has it's own brand of insanity but we love it. Most days I am more monkey wrangler than mother but I do the best I can. Todays goal - getting to tomorrow.

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