April, Karah, Alyssa and our special angels, Kaitlyn and Evan: March 2009

Last week we had our ultrasound to see if the baby was a girl or a boy. It would not let us see and just so you know, today we couldn't see either! We will find out on Monday with the preliminary test results from the amnio! I will post again Monday. Now onto what we have learned...(be forewarned, it's not good news!) The doctor scheduled a follow-up in two weeks (when we get the rest of the amnio results.) When asked by the scheduler what we were being seen for she said "multiple congenital anomalies with a possible chromosome abnormality." I'll start from the head down. There are several cysts on the baby's brain. They are called Choroid Plexus Cysts. Alone they could be fine. They are however, with other symptoms which the baby has a marker for a chromosome abnormality. Also, it has a single artery umbilical cord. Instead of two arteries and one vein in the umbilical cord, our baby just has one of each. That also is a marker for a chrom abnormality. Seen alone, the baby could be fine. Next, the first ultrasound showed a bend in the arm, and extra bend in the arm where one shouldn't be. In today's ultrasound, both arms are actually affected. It's down by the wrist and I don't know how else to explain it. The heart is abnormal. It's tilted forward so it's not sitting right in the chest cavity and something is wrong with it. It was hard to get a really good view of it with the angle it was at but it definately was not normal. While we were watching we'd see episodes of it slowing down really slow and then starting back up again. Weird and scary! Also, the baby is measuring small. They think he/she may have a club foot and maybe something wrong with it's hips (hence the reason for not showing us it's special parts!) The baby also has an omphalocele. (you can see it on the ultrasounds above the belly.) That's where the intestines and possibly some of the organs are outside the baby's belly. They think the stomach and maybe some of the liver is out there. I think it would also have a detached esophagus because I don't think it could reach all the way down it's body, out into the omphalocele and into the stomach. Also, clenched fists and overlapping fingers were seen at times. Possibly a small jaw and lowset ears. The most common thing for a baby to have that has cysts on it's brain and the umbilical cord problems along with the other stuff is for it to have a chromosomal abnormality called Trisomy 18 or Edward's Syndrome. I think that's what we are looking at because the baby has like everything on the list of symptoms! One thing they told us, which I think is very important to know is that if it has Trisomy 18, even with no other symptoms, the baby's chance of survival is the same. It's very low. If the baby can manage to grow and live until the due date, and can survive delivery the average lifespan is anywhere from dying at birth to 5-15 days. I know this probably sounds terrible. And yes it is. We are trying to deal with everything though and we know that Heavenly Father has given us this special spirit for a reason. I don't know how long he/she will be with us but I know he/she will always be our baby and we'll be able to be together again someday (along with Kaitlyn!) I hope to treasure any of the moments we are able to spend with it (I hate calling it it! Can't it be Monday yet so I can know the gender!?!) Another important note is..."This type of trisomy is not hereditary, and is not due to anything the parents did or did not do." Shawn worried because his brother has trisomy problems and he thought he maybe brought those cards to the table. Not true! It happened at conception and it's just how the chromosomes lined up!

If that's not enough to take in, I've pasted some info at the bottom if you are interested.

Thank you so much for all the prayers, fasting, support and thoughts on our behalf! They did not go unheard! I know it seems like it didn't help the baby get better but I don't know that that is in His plan. It does and will help us to be able to handle what we are going through and help us have peace and be happy again. My hardest thing is telling the kids about all this! Adults are a different story, they can find a way to deal. Little kids are so innocent and may have a hard time understanding why bad things have to happen. Any suggestions? Seriously! It makes me cry every time I think about the fact I will have to sit down and tell Karah and Alyssa their baby brother/sister is really sick (they already know we think the baby is sick and we needed to get extra tests) but how do I tell them that the baby in my belly that they talk to and sing to and cuddle with is not going to survive? Karah is so so so excited for the new baby and I know it will just break her big sweet heart! Hopefully, they can find peace in this as well! I know it's all in how we present it to her and handle the situation. I am just dreading it! She already asked me why I had to get a needle poked in my belly... One good thing is the baby's face looks fine so if it's body is a little scary for the kids we can wrap the baby in a blanket and let the girls hold the baby and say goodbye! Anyways, thanks for all the support! I think I need to schedule a playdate like every day so people are able to keep tabs on me so I'm not a recluse while Shawn's gone (he leaves Wednesday.) I don't want to hear lectures about him leaving again. His unit wants him to stay home, he wants to stay home and be there for us, but our medical benefits will run out before the baby is born and this could be costly, plus we need the income! (It's like someone saying stay home from your job for 5 weeks with no pay and we aren't going to restart your benefits till you come back and make sure you rack up lots of medical bills.) I know I would rather him go now while we are still fine (I have a feeling we'll be okay till he gets back) instead of really really needing to go in a few months when we really really need him here! Get it? Sorry this is such a long and detailed post! I need to get it all down and in one place before I forget. I will try to keep this up to date so you are all informed. Check back often and I promise to still put up stuff about the other cuties too!

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Edwards Syndrome : Edwards Syndrome (Trisomy 18) is a chromosomal abnormality where there is an extra chromosome present in every cell of the body. This is an example of where “the more the merrier” is not true. This extra chromosome means that every cell has extra information encoded into it. The extra information causes confusion in the way that the cells are formed and results in the potential malformation of all of the body systems. Just like with Down's Syndrome (Trisomy 21), there is a wide range of how this condition will play out (what the doctor's will refer to as your child's phenotype). Unfortunately because there is more information encoded on the 18th chromosome, the severity of this condition is greater than that of Down's Syndrome. Current studies show that while 1:1500 children will be diagnosed prenatally with trisomy 18, only half that number (or 1:3000) will be born alive at full term. Of those who survive to birth, only half will make it to two months of age, and only 10% will survive to their first birthday.

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Some of the typical characteristics of Trisomy 18 can include heart defects such as VSD (Ventricular Septal Defect - a hole between the lower chambers of the heart) , ASD (Atrial Septal Defect - a hole between the upper chambers of the heart), and coarctation of the aorta (a narrowing of the exit vessel from the heart), kidney abnormalities, omphalocele (a portion of the intestinal tract is located outside the stomach in a sac), esophageal atresia (the esophagus does not connect to the stomach, meaning the baby cannot eat by mouth), and polyhydramnios (excess amniotic fluid), clenched hands, choroid plexus cysts (a pocket of fluid on the brain that is not problematic in itself but may be a marker for Trisomy 18), rocker bottom feet, and delayed growth, micrognathia (small jaw), low-set ears, and a strawberry-shaped head, as well as severe developmental delays *******

What is the Risk of Chromosomal Abnormality? [6-10]Choroid plexus cysts are most strongly associated with trisomy 18 (Edward syndrome). Trisomy 18 (Edward syndrome) is a disorder characterized by severe mental retardation and multiple abnormalities, such as cleft lip and palate (BABY DOESN'T SEEM TO HAVE THIS-THANK GOODNESS!), small jaw (micrognathia), low set ears, club feet, clenched fists, intrauterine growth restriction, single umbilical artery, elevated amniotic fluid ( polyhydramnios), and kidney abnormalities. More than 90% of fetuses have a heart defect. The condition is not compatible with life, and only 5% to 10 % of infants survive the first year after delivery

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Anyone seen that video online that's called "99 Balloons" about a little boy who lives 99 days and when he dies they send off 99 balloons. They celebrated each day they had with him because each day could be his last. I personally think you should cherish EVERY day with EVERY child even if they are healthy because you never know when they or you will be returning back to Heaven. Anyways, I got off topic! The baby in 99 balloons had Trisomy 18. He lived a long time (it looked like he also didn't have much wrong with him) but still it was only 99 days.

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There's a website for people who know people with Trisomy 18 or parents of babies with that and it is at...http://www.trisomy18.org/site/PageServer?pagename=homepage

There are a whole bunch of life stories for babies who have had this along with pictures and just so you know it will make you ball! But if you want to check it out it's at http://www.trisomy18.org/site/TR.

I ran into the store to get more balloons (the ones I bought on her birthday at Zurcher's didn't even last a day!) While I was gone Shawn let Lys play with my chapstick...tinted chapstick. She put it all over her face and he thought it was funny!

We're here!

Karah sat down when we got to Kaitlyn's grave and looked really serious. I asked her what she was thinking about and she said Katie. We told some stories about her before letting the balloons go.

Here are the balloons before we let them off.

Alyssa wants them to go UP! I thought it was cute that she kept pointing!

Shawn worked on cleaning off the headstone

handing out the balloons

1...2...3...

Let go!

Lys ran off after them and then stopped and pointed in case we didn't know where they went!

It was super windy and these spinners were going so fast! Karah was lowering hers to the ground thinking it might cut the grass.

The girls smelling the pink roses. After Shawn got the headstone clean, Alyssa put some grass on it. Then it became a game and she was trying to throw grass on there faster than he could sweep it off!