Totally over their heads

 Before Birth  No Responses »
Dec 122011
 

Posted by Kim on Facebook

Got my first “So you didn’t find out in time to abort?” question today. Unfortunately when I said we did not want to do that I got the impression explaining why would be utterly fruitless. 🙁

Someone responded with “I hope you didn’t give that person a second thought.”

Unfortunately I did give that person a second thought (which is why I posted it – to get it off me) – only because part of her job involves contact with children with special needs. Which made me think “is that how you view these children?” The second question she asked was “So you hope there’s a chance the Drs are wrong? Drs are wrong all the time.” I don’t think the Drs are wrong – I think they are very very right. But going into detail just seemed fruitless so I dropped it. I do believe she did not intend to be mean but her choice of words was thoughtless.

 Posted by on December 12, 2011 at 8:00 pm

The Next Few Weeks

 Alexandria's Life, Before Birth  No Responses »
Dec 112011
 

Original Text of an E-mail from Douglas to Family/Friends

Dear friends and family,

Kimberly became full term this past Thursday.  We have been struggling with how exactly to handle Alexandria’s birth, do we wait for her to come on her own, do we induce early, do we induce on her due date?  We have read concerns about her coming early and others testimonials where waiting meant they were too late and their child died before labor.  It has been difficult to know what to do, what actions we take would extend her time or lessen it.  God has blessed us with very competent doctors, but even they cannot know.

After a great deal of prayer we have decided to induce next week, starting Thursday December 15.  Kim will be admitted around 8pm and start medications to prepare her, and on Friday morning they will begin Pitocin.  I will be staying with Kimberly in her room.  This means, at the very latest, Alexandria will probably be born on Friday December 16th.  We do not know how much time God will grant us with her, if any.   Many of you have wondered about her chances and what hopes we have.  Only 70% of babies with Trisomy 18 survive to full term, so she is a fighter and is beating the odds so far.  Approximately 50% of children carried to full term are stillborn.  There are no medical procedures we could perform to increase those odds, and a C-section would put Kimberly at more risk.  Beyond that it is hard to know what her chances are.  We have heard many accounts of only a few hours.  The median life expectancy is one month, only 10% live to see their first birthday.  We know that some families choose not to have a public funeral in these cases, we are planning to do so.

Kimberly’s parents will be coming here on Tuesday and will be staying with us during this time.  As we need help with the boys we’ll definitely contact those that have offered to help.

Should Alexandria not be stable we will only have the boys and our pastor come and spend time with us in the hospital.  If she requires surgery, or if she is stable, we have not decided on the amount of visitation in the hospital we’d be able to handle.  We’ll send out additional e-mails if and when we’ll be able to have visitors (either at the hospital or at home).  We know you will all understand and appreciate all the prayers, love, and comfort you have all provided us.

 Posted by on December 11, 2011 at 8:44 am

Surprise

 Alexandria's Life, Before Birth, Uncategorized  No Responses »
Dec 072011
 

Tonight we went to Wednesday night Advent service at church. I really didn’t want to go. While Gabe was in preschool for the afternoon I decided to go shopping for burial clothes. I was looking for a white, cotton, longsleeve dress. I found one in an online store that’s just what I want in size micropreemie and preemie. With the news at the last ultasound that Alex is 4lb 7oz, I’m afraid I’m going to need a newborn size dress. I looked at Babies R Us and Buy Buy Baby but the Christening dresses are all taffeta, short sleeve, and the bottoms are all big, long and puffy. I’m just looking for simple. Coming home empty handed made me sad and feel like a failure, not to mention the lovely reminder that I wasn’t there to shop for a whole happy girlie wardrobe. It was a necessary evil. There won’t be time for shopping after her birth not to mention I’m sure I won’t want to be looking for a dress after she’s gone.

Doug suggested maybe we should stay home and spend time together as a family instead of packing everyone up in my state and heading to church. I told him I didn’t know why but church was where I felt we were supposed to be.

After the soup supper and church service as I was getting my coat on to leave, the bible study girls suddenly pulled me into a classroom. They prayed over me for us and Alexandria. The classroom was roasting hot. I was wearing my winter coat, very pregnant, and surrounded by a circle of women with their hands on me. I thought – oh no, I’m going to pass out. Oddly, as they were praying, instead of their hands feeling like weights on my body it felt as though they were holding me up. Some did not know much about our situation so I answered some questions and filled in some info about us. Then they gave me a surprise baby shower of sorts – a bunch of gifts of baby clothing, pizza gift cards, freezer meals, etc.

I was told later they were afraid they had overwhelmed me, I’d think they were being too intrusive and they had scared me off. Quite the opposite. We just started going to this church a couple months ago. We don’t really know anyone. To have so many people care about you so much, show so much love, pray for you even though you’re a stranger.. wow. Who wouldn’t want that?

 Posted by on December 7, 2011 at 9:54 pm

Another checkup

 Before Birth  No Responses »
Nov 072011
 

Posted by Kim on Facebook

‎33wks.. heartbeat in the 135-140s.. still measuring 3 weeks behind which means she has not stopped growing. Finished our birthplan/medical care plan and had the OB review it. She is currently laying across my stomach so if anyone could convince her to turn head down that would be great 🙂

 Posted by on November 7, 2011 at 1:23 pm

Hospice

 Before Birth  No Responses »
Oct 172011
 

Posted by Kim on Facebook

Met with Hospice today while Gabe was at preschool. Hopefully will gather the courage to talk to him soon about all this. Two words you never assume are related – Hospice & childbirth. Very unreal.

When we met with the neonatologist and social worker at the hospital they suggested we be referred to Hospice. They have a perinatal program that will help us with how to talk about this with the kids, creating a birth plan (what medical measures to take or not take), making sure we understand what we can ask for at the hospital, answering any questions we have about the whole process. If she is able to come home they have nurses who will assist us in her medical care and make sure she’s comfortable.

 Posted by on October 17, 2011 at 10:20 pm

Statistics

 Before Birth  No Responses »
Oct 172011
 

Posted by Kim on Facebook

Every single day in the US, 2,000 women lose a baby to pregnancy/infant loss. That’s 700,000 a year, a quarter of every female in this country. So why does no one talk about it? – www.iamtheface.org

The discussion that followed this post was interesting. I know I don’t talk to others about their miscarriage/stillbirth/death of living child because I don’t want to make the person feel uncomfortable or sad. Some said they didn’t know the statistic was that high. Others said they were afraid to talk about something they didn’t understand or hadn’t experienced. One person said talking about their loss made it seem more real. Another said they had not forgotten about the loss of their child so why would it be painful to mention it? Sometimes you need to make yourself uncomfortable to make someone else comfortable.

 Posted by on October 17, 2011 at 8:54 am

Tour of NICU

 Before Birth  No Responses »
Oct 082011
 

Posted by Kim on Facebook

Visited the NICU 2 days ago and met with one of the neonatologists. Still can’t get over what the set up is there compared to what image I had in my mind of what it should look like. Can not stop thinking about the seemingly lonely babies laying in their isolettes in private rooms with no one in there with them.

 Posted by on October 8, 2011 at 10:50 am

Unbearable

 Before Birth  No Responses »
Oct 012011
 

Posted by Kim on Facebook

Why must we relive the nightmare every time someone says “A girl! You must be so excited!!”? 3 times in 2 two days. Twice while attending a little girl’s birthday party. Plus an ultrasound tech who was not aware. I can’t wait for the “Hey, you must have had your baby already. How is he/she?” God has a seriously warped view of how much we can bear.

 Posted by on October 1, 2011 at 4:44 pm

Another checkup

 Before Birth  No Responses »
Sep 122011
 

Saw the OB – baby’s heart was in the 140s and measuring 22 weeks (I’m 25wks).. was told to gain weight – a big change from the no-more-ice-cream-for-you-missy I was told with the other 3 kids. Mmmm cheesecake here I come! At the 20wk ultrasound she was measuring 17wks I think.. so I guess she has not slowed down much which is good. Ultrasound in 2 weeks.

 Posted by on September 12, 2011 at 12:49 pm

Found an inspiring blog

 Before Birth  No Responses »
Sep 042011
 

Posted by Kim on Facebook

Came across an inspiring blog today (http://ninetynineballoons.com/) about a family with a little boy Eliot who lived 99 days with T18. Liked what his dad said – “The heart makes a terrible student, but a great teacher. Ever illuminating the fact that walking through something never feels like you thought it would, and exposing foolishness at thinking you could fathom a path unwalked.”

What was inspiring wasn’t that he lived so long.. I’ve read lots of stories where kids (especially the ones with Mosiac T18) live quite awhile. What was inspiring was they were very open and honest, they celebrated every single day knowing every one was a gift, they were not in denial of his mortality, life went on after he died but they never forget.

After reading this site I suddenly felt at peace.. even hopeful that we might get to see her alive. I don’t know how long it will last. Maybe I just couldn’t grieve anymore.

 Posted by on September 4, 2011 at 8:25 pm

One of my favorite quotes

 Before Birth  No Responses »
Aug 292011
 

Posted by Kim on Facebook

One of my favorite quotes from Scrubs (tv show) from a guy whose mother is dying of Huntington’s disease and doesn’t want to take a test to find out if he has it: “Once you learn that information, you can’t unlearn it. This way my future is still mine. It can be whatever I want it to be.”

 Posted by on August 29, 2011 at 6:48 pm

The results

 Before Birth  No Responses »
Aug 222011
 

Posted by Kim on Facebook

We received the results of the amnio today. Our baby girl does have Trisomy 18. This condition is fatal. The high risk Dr does not expect her to be born alive. We will continue to have weekly appointments to check for a heartbeat. Please keep us in your prayers for the difficult weeks and months ahead.

 Posted by on August 22, 2011 at 3:25 pm

The First Ultrasound – How we found out there were complications…

 Alexandria's Life, Before Birth  No Responses »
Aug 112011
 

Original E-mail from Douglas to Family and Friends

Kim and I had our first ultrasound yesterday. We found out that we are having a girl, but there are complications. The ultrasound revealed several abnormalities in her development, all of which point to a chromosomal disorder. We met with a high risk specialist today, who performed another ultrasound, and walked it through with us for the results. She has a heart condition, two choroid plexus cysts in her brain, and is very under normal weight among other problems. With her current conditions he believes she has a 1-2% chance of living. He believes these abnormalities are caused by Trisomy 18, also known as Edwards Syndrome. We will have definitive test results on Edwards Syndrome on Monday. If she has Edwards Syndrome she will have a less than 1% chance of survival after birth, but he has prepared us that she will probably pass-on before she is born.

Please keep her, Kimberly, and our family in your prayers. If you have any questions, feel free to ask me, we’re open to answering them.

Love,
Douglas

 Posted by on August 11, 2011 at 8:42 pm

Baby

 Alexandria's Life, Before Birth  No Responses »
Aug 112011
 

Posted by Kim

In the days leading up to the 20 week ultrasound I had posted on Facebook many times about how excited we were, asked everyone to guess the gender, posted a picture of my new “ultrasound day” haircut. When August 10th went by with no posting as to who guessed right, friends started to ask what was going on.

This was my post on Facebook:

By now you’re probably all wondering what happened yesterday. We were so excited for “Ultrasound Day”. We had always talked about having a big family. After a rough start with Aden, then losing our second to triploidy very early on, we had two healthy boys. Four kids sounded like a good number so when we found out number four was on the way we were finally going to complete our dream of a big family. It was scary at first. Only 16 months between kids. But it was meant to be right? Stop worrying. Enjoy. This is the last time.

We went in for the ultrasound and relief started flooding over me as we saw the first images. Head, spine, hands, feet. Then we saw the “3 white lines”. After 3 boys we had no idea that meant – GIRL! We were elated! Finally our family was complete. We sat in the waiting room discussing names.. trying to sort out all this would change in our family. They called us in for our follow up appointment with the OB for what we thought would be a routine visit. With beaming faces we said “It’s a girl!”. The OB with a serious look on her face said “Yes, it’s a girl.. but there are complications.” She proceeded to tell us what the ultrasound tech had not – our daughter has brain cysts, a rotated heart, a 2 vessel chord, club feet, severely underweight.. the list went on. She said this was consistent with Trisomy 13 or 18.

Suddenly the images of braiding her hair, shopping for prom dresses, walking her down the aisle disappeared. None of those things will happen. Instead we will be planning a funeral.

We saw the high risk OB today who confirmed everything yesterday’s OB suspected. He believes this is Trisomy 18. He used the words “incompatible with life”. He gave us a 1-2% chance of her making it. And even if she left the hospital, she would most certainly not see her first birthday.  Unbelievably by law he was required to tell us, even though we didn’t ask, we were under the 24 week requirement for abortion.

This has been a lot to process. By all accounts having 3 children with non-hereditary chromosomal abnormalities just shouldn’t happen. We will know for sure when the results of the amniocentesis come back on Monday. Any of you who know my shear fear and panic of needles will understand that the decision to do the amnio was extremely difficult. But knowing the results will mean that if I go into premature labor, instead of a possible emergency c-section or whisking her off to the NICU, they will put her in our arms where she needs to be.

Please pray for us. The next few months will be very difficult.

 Posted by on August 11, 2011 at 8:31 pm