weekly ultrasound time

Hi all first off sorry it tool me til this evening to make a post I know a lot of you have been wondering ....EVERYTHING IS OK :)


Ultrasound about the same as last week.
His head grew a little again (now measuring 21wks) and the sac again appears to be the same size. There is no fluid build up in the ventricles.
Heartbeat was still strong at 152.
He was drinking then all of a sudden (like clockwork) he started sucking his had it was so cute b/c she had the image enlarged so we saw it clearly.

She asked today if we actually got to see the MRI pictures with the lower kidney. I said yes why she said was it low? I said oh yea it was. She then said huh? I see that in the report but I dont see it here now then she showed us how they look like they are right next to each other so.... maybe just maybe?? hmmmm

The amniotic fluid is still low so that is a concern I am not 100% sure what that means but I think it could be a risk for early labor :(


It was a emotional week for me this week. I dont know why but I found myself depressed a lot. I was even wondering around in the baby section at Walmart one day crying. I see pregnant women who look so happy and I hate them :(
I got to thinking, a lot of our friends and family that have kids obviously know I am pregnant what are they gonna tell their kids if I am no longer pregnant but there is no baby :( We havent even told our own kid yet.

One day at a time is now 2wks down....

Name...

All

This is Chris. Just a quick update on our boy's name. After we told Kayla his name, she was very excited and said "his name starts with a 'K' just like mine". So we are going to be spelling his name with a "K" instead of a "C". It was so cute we couldn't say no! That also means they both will have the same initials "KMS".

Korbin Matthew Soldano

Daddy can't wait to see you, so fight for me buddy!!!!

Chris

Ultrasound

Well here we are the weekly Ultrasound
Which I guess I will continue until I see my regular OB, who is apparently very sick right now so everyone say a prayer she gets well soon!

I feel great!! i hope its not one of those jump the gun feelings but here we are one week after the GRIM news and I think ONE DOWN , only 14-16 to go WE CAN DO THIS.

Ok so to report the Dr said everything looks "stable" his exact words. I know thats not hey looks great or looks good but to me to hear the words stable was a GREAT feeling.
The heart beat was strong at 158.
His head HAS grown and is about 20wks 2days (remember Chris mentioned it was small it was only measuring 19 wks last week) The Cele (that is the short name we gave the encephalocele sac) looks to measuring exactly the same so no change there.
Sarah the U/S tech didnt give us a measurement but she looked at the amnio fluid level (deepest pocket) and I quote "looks good very pleased there, keep drinking the water"
He of course as usual was not cooperative the poor girl only had to get 3 measurements and it took almost 40mins lol again no shocker as he is determined to not make any of this easy :)

My only concern was she had to measure the ventricles and when the Dr came in to double check everything for her they talked to each other he said no it looks the same I think. then he turned to me and said did they mention in the meeting that the 3rd ventricle looked normal right??..to which i had no recollection so I need to start googling what that is :) (yea yea dont tell me not to I am GOING to do it anyway)

I know its not much but like I said one day at time, one day at a time!!

TGIF....and a NAME it is!!

TGIF one day at a time has become four days and that is a good feeling.
Everyday I pray for another day and am ever so thankful when I receive it.

One of the moms from an encephalocele group i joined had her son Cooper and he is not only adorable but HEALTHY.. CONGRATS HALEE so happy for you guys!!!
It helps give us just a little bit of hope too :)

Chris and I have done a lot of soul searching and deep conversations.
One of the conversations was the name. We decided that the one I had googled the Monday night of the 20wk U/S when we found out Corbin Matthew which means
rare , gift from god.
Everyone kept telling how "rare" this is and to us its still a gift from god.

I took Kayla to the store today so she could pick out a hospital outfit for when he comes...when ever that may be. I want to be ready. It was a cute little layette with bear booties, and a cute hat.
We still have not told her anything is wrong we are still not 100% sure how or WHAT to tell her.

That's all I have for now I hope everyone has a great weekend!!

my thoughts!!

First like Chris I want to take a minute to say how completely overwhelmed and blessed I feel for all of the support and prayers.

Chris pretty much explained everything, well i might add. I dont know how he did that i just couldnt find the words. There was one more concern he forgot to mention that my amnio fluid is right on the boarder line of be considered low.

Like Chris said even tho the news was gut wrenching we havent changed our mind to continue and take each day at a time. I could NEVER live with not knowing.
I understand that he might not make it. I know this probably sounds crazy but even if he gets here and only lives 5mins at least I can hold him and let him know that mommy and daddy LOVES him more than ANYTHING and we NEVER STOPPED fighting for you!!

I will keep the blog updated with any Dr appts or milestones, thoughts or concerns.
Basically anything that needs to be shared.

again thank you everyone for you love and concern

~tonya

Detailed Update

Hi all. This is Chris.

First of all, Tonya and I would again like to thank everyone for their thoughts and prayers. WE ARE truly blessed to have such an AMAZING group of friends and family like you!!!!! Words can even say how much you all mean to us.

I wish I had better news to report, but that is simply not the case. We learned a lot yesterday, but unfortunately, nothing was good. Our boy has what they call Encephalocele. There is sac forming on the back of his head and was called moderate to severe in size, and the doctors found a significant amount of brain forming in the sac which is very serious because if our boy makes it through child birth, the brain matter in the sac ends up dying and has to be removed with multiple surgeries. His head is dangerously small, in the 3^rd percentile, which means out of every 100 babies born, 97 of them have larger sized heads. Also, his kidneys are not developing properly and his left kidney is in the wrong place, located in his pelvis. The fact that there are 2 separate uncommon abnormalities forming at the same time, the geneticist thinks there is some genetic cause for this, which could end up affecting future pregnancies, but they cannot be sure without further testing which will have to be done by an autopsy. The doctors do not believe our boy will survive with the amount of brain tissue forming in the sac and have suggested that we end the pregnancy. They believe that this wasn't caused just by neural tube defect, but a possible brain defect that possibly could mean that our boy is brain dead at this point and all the movement is just reflexes. This is why they believe there is no hope and have given us information on the Shining Stars program which is basically Hospice for infants if we decide to let nature run its course, which at this point is our plan. The doctor’s feel that the baby probably will not survive full term, and if that is the case, Tonya will be induced and have a still birth. If our boy does survive to term, generally there is a very high mortality rate and we might have a month or so with him, if that. They have stated that the health of Tonya is the most important thing at this point, so no C-Section or fetal monitoring will be performed because the damage from the abnormalities are already too great. Now, there is a VERY small percentage of children who do live through this but they are severely handicapped and need 24 hour care pretty much the rest of their lives. Most end up never being able to talk, walk, sit up, see, and or hear. They cannot tell us because every one of these children with this condition is different.

We know doctors can be wrong, but at the same time and have to prepare us for the worst case and do not want to give us false hope. Initially, the news yesterday had absolutely crushed all the hope we had in our hearts, but after long talks and prayer, we just refuse to give up all hope, even though the doctors seem to have none. There are still miracles that have happened and I know there are kids that have survived, but since ever case is different, we just don’t know how or what to think.

This whole ordeal is absolutely crippling to me mentally at this point. No matter how hard it is on me, i can't even imagine how much harder this is on my wife. Tonya, i absolutely LOVE YOU WITH AL MY HEART and no matter how this plays out, we will get through this. We will put our faith in God knowing there is a reason for everything he does. That being said, you have no idea how hard this was to write this!

Again, even with everything that is going on, we can't even express how fortunate we are to have a caliber of family and friends that we do. Thanks again for all the prayers and thoughts. We will be filling you in as we know more. This will be a very long process.

LOVE YOU ALL!

Chris, Tonya and Kayla

don't want to leave everyone hanging

I am sure those of you following are waiting for an update If you haven't heard through the grapevine yet it wasn't good news at all
absolute certain mortality
I will post more details when I have a real computer not my phone and have composed my thoughts
Thank you everyone for your prayers and support

Midday update

I thought id take a minute to update on how the day is goings so far.
MRI at 7went ok. It was literally Uncomfortable. I was in there for about an hr an 20mins. They had to get 3 extra sets of pictures I guess he wasn't cooperating..which is power for the course. He has decided to make this whole thing difficult :)

The u/s was interesting. I got to meet Dr Hobly she will be part of the team from the fetal care center. She said she didn't want to speak to much b/c she didn't get to review the MRI yet so she likes to have all info possible before speaking.
The bulg appears to be the same size (approx 3cm) while his head did grow. So hopefully that is a good sign.
He was sucking his thumb during the u/s it was soooo adorable.
Again as he said everything else looks good it seems to be an isolated abnormality. His heart was a strong 152 bph

Thats all I got for now big meeting at 5......

Tomorrows the big day

Tomorrow is the MRI and meeting with the team. I sure hope there is a neurosurgon in that team.
I am anxious, nervous, sick to my stomache all the normal
Hopefully we will get some more answers and maybe just a glimmer of hope

night all!!

WELCOME ALL!!

Oct 2010 Chris and I found out we were expecting #2
It was very exciting and long over due.
On Nov 7th i went for my normal intial OB appt to confirm the pregnancy and get blood work. All was well
I went back the first week in Dec for our 10WK U/S heartbeat was strong and we were told everything looked great. In the weeks to come i had two more U/S one to double check all was ok b/c I was bleeding (spotting) the U/S tech and OB said everything looked great. The next U/S was at 16wks (just before the 20wk) they couldnt get the heartbeat so they did the U/S again we were told everything looked GREAT.

On Monday Feb 28th during what should have been a routine 20wk U/S our world was turned upside down when the U/S tech quickly excused herself from the room only 10-15mins into the U/S stating she had "concerns" about the head and went to get the OB. The two returned to the room to tell us our sweet baby boy has a bulg protruding from the back of his head and his skull was had a gap the didnt close. They kept saying sorry over and over we felt it was a death sentance for our baby.
Our OB referred us to the Seton Center at Good Samaritain Hosp where the next day we went for a level 2 US and they confirmed our son had an Encephalocele.
We have now been referred to the Fetal Care Center at Cincinnati Childrens Hosp
On Monday March 14th we go for a Fetal MRI and later that day meet to discuss prognosis and possible care our baby will need during utero and after birth