Zoey Ella-Lee Eoff

March 25, 2008

Photographer Documents Terminally Ill Infants
(CBS 5) Reporting Thuy Vu

Christina Andresen christina_andresen@hotmail.com

Update: 9-19-08

I just wanted to send a quick update with some more pictures of our little angel Zoey.

Our family is surviving day after day, all the while missing our little Zoey. Mommy and Big Brother have relocated up North and are awaiting their brand new house to be done. With that being said, Zoey's Mommy and Daddy weren't strong enough to survive the loss of a child and so have decided to go their own separate ways. I applaud all of those parents that have been able to cling to the future and survive such a terrible ordeal; it’s a rough road.


Here is a picture of our little girl two days before she left for Heaven, this was taken in the hospital after she had stopped breathing then was resuscitated and stabilized.



Here are a couple pictures of an unconditional love between a brother and a sister.


Here is one of our little girl striking a pose while taking a nap in Daddy's arms!




- - -

5/26/08 Zoey is in heaven, resting in the arms of Jesus.

Zoey's eyes are now open... to the awe and wonder of a world we do not yet fully
comprehend...

Today was both heartwarming and heart wrenching as we physically held Zoey for the last time. But I find comfort in knowing she will forever be held in our hearts, in the memories of seeing her smile, and the outpouring of love from family and friends, as well as strangers. With loss comes gratitude that we were able to love her so completely in such a short amount of time. We witnessed first hand so many miracles as Zoey defied the scientific odds time after time. Maybe every moment was a little sweeter, every obstacle that much more grand, and every kiss that much more precious because we had no guarantees how much time we might have with her. I do know that people prayed who may never have before and others clung to what they already believed spiritually with even stronger conviction. I truly believe that God  did not let us down. He blessed us with two glorious months...and a love that we wouldn't have known otherwise. For that I am eternally grateful.

I am confident that Zoey is in the arms of Jesus!

With heartfelt gratitude for your thoughts and
prayers,

Charleen (Zoey's Grandma)

****************************************************************************
5/26/08

I can't believe I have the energy right now to send this update however I find myself typing away. I wanted to let my T13 families know that Zoey passed away this morning at 8:30am. She went to heaven from her mommy’s arms; she was engulfed with as much love as we could possibly send her way. Her final night was a rough one, one that had many painful moments, but we kept her as comfortable as we could up until her last breath, she was such a fighter. I thank all of you in advance for your thoughts and prayers... it means so much to our family.

Christina (Zoey's mommy)
 

4-6-08
Well the big day has finally arrived. We went into the Dr’s on Tuesday 3/25/08 because I had the feeling that Zoey had turned from a breech position into the correct position. After a quick ultrasound we found out that Mommy was right. They sent us over to the hospital to start the induction. My OB popped my water at 10am and by 11am we started the pitocin. I was having regular contractions however I couldn’t seem to progress past 5cm. Because of my intense pelvic pain (that started amount 2 months ago) we decided to just proceed with a c-section. They wheeled me into the operating room at 10pm and ended up having to knock me out because I could feel intense pain on my pelvic when they were starting to pull Zoey out.

Our little angel arrived into this world 3/25/08, 10:44pm, 7lbs .05oz, 19 1/4".... She is our little miracle. The only things that the Dr can tell us are that she has:

1) A heart murmur
2) She is tongue tied (minor thing, cant stick tongue out past bottom teeth, also common among healthy kids)
3) She has slight rocker feet
4) She has a spot on her head where the skin didn't grow, at 12 days old it is almost completely healed.
5) Rapid respiratory system, averages about 60-70 breaths/min normal is in the 50's.
6) She has under developed eyes, they still haven’t opened

Other then that she is perfect; she is eating and sleeping really well. And most of all she is loved so very much. I couldn’t imagine not being able to hold her in my arms. The hospital staff was so great to Zoey and I, and the out pour of love has been tremendous since we have been home.

I will be updating pictures as soon as I receive the ones we took through the NILMDTS organization. Our photographer was absolutely amazing however here are some of our little angel to hold everyone over.

- - -

3-21-08

Just wanted to update everyone, we will be going in next Thursday to have Zoey.

Right now she is anywhere from 8-9lbs and is still breech. We will be going in Thursday morning and my OB will try to manually turn her so we can have a vaginal birth, if she turns then they will start the pitocin right away and induce labor. If she is stubborn like her Mommy, daddy, AND big brother and she doesn’t turn around they will take me in for a c-section.

Today we are going to have maternity pic’s taken with a photographer through NILMDTS org, and while we are there a local news station will be filming the session and will conduct an interview with me once we are done. Around this area there isn’t much awareness of the NILMDTS services, so I am very happy that I have the chance to help spread the word about this wonderful organization.

Please keep the prayers coming in these next few days before Zoey’s birth, they really do make all the difference.
 

3-14-08

36 weeks 2 days

We went to the Doctors yesterday and they said Zoey is roughly 7lbs 6 oz (15% error margin so she could be 6-8lbs) which is good! We will be able to keep her incubating for another couple weeks allowing her lungs to completely develop. I'll keep everyone updated if anything changes from the original 4/1/08 induction date!

Hugs
Christina

- - - -

3-11-08

Just wanted to let everyone know that I am going in on Thursday 3/13 (also Trisomy 13 awareness day) to have an ultrasound to check and see how big our little Zoey is.

My OB doesn't want to wait until I'm a full 37 weeks because that's how long we waited to see how big my son was and he was already 9lbs. While they are measuring and determining her weight they will also check one more time to see if there are any T13 symptoms present. Ideally we want to wait until I'm at least 37 weeks to induce so Zoey has a better chance breathing on her own. We don't want the Dr.'s to try to have to guess if breathing issues are associated with bring premature or because of the T13.

Keep your fingers crossed that I can make it until 37 weeks and that they won't be able to see anything wrong with our angle.
 

- - -

 2-15-08

Hi my name is Christina; I am currently 32 weeks pregnant with my second child. When my partner and I found out we were expecting, we were so excited to hear the news, we soon found out that we were having a little girl and couldn’t have been happier. My son would be so happy to have a little sister as he had been asking for one 6 months prior to us even knowing we conceived.

My pregnancy was pretty uneventful until we got the results back from our APF screening test. According to the test results our little girl was still in a “no risk zone” for any of the Trisomy Disorders however they suggested that we do further testing and speak with my OB. I was a little confused as to why I would need to do further testing if I wasn’t in a risk zone so I called my OB right away. She advised that although I was still considered normal my risks for having a downs syndrome baby was that of a 30 year old (I’m 25), she said not to worry that she thought everything was okay but we should do an amnio just in case. I asked her about the other Trisomy Chromosomes that they tested for, should I be worried? My OB advised that my risk had decreased to that of a 20 year old (1/100,000) for T13 so not to stress.

We went in for the amnio a week before Halloween (2007), overall I was surprised that it didn’t hurt as much as I thought it would. Before going into the room for the amnio we met with a Genetic Counselor and she said that we didn’t have to do an amnio if we didn’t want (it’s optional) to as she didn’t see any risks associated with my age, the APF screening results, nor was there anything detected on previous ultrasounds. Amnio’s are now offered to everyone so we opted to just do it because our OB suggested that we should just to give us some peace of mind. They did a detailed ultrasound (level II) while we were there and they could not detect any physical or structural deformities. This was excellent news; we felt a sense of relief pass over us. They confirmed while we were there that our little one was a girl! The genetic counselor said that if we get a call from their office everything is fine, if there are any problems they will call my OB and then call me together or my OB will just deliver the new.

16 weeks

On Oct 31, 2007 (Halloween Day) I got a call from the company that did the amnio, just hearing her voice was a relief to me as she said if I got a call from her everything was okay. A little into the conversation she delivered the devastating news. Our little girl didn’t have Downs Syndrome instead she had something called Trisomy 13. At this point I didn’t really know the extent of what was wrong or what to expect. She went on explaining that if our little girl survived to term the chances were pretty high that she would die within the first 48 hours after birth. I was devastated, and I just broke down. How could this even happen, I had less then 1/100,000 chance of this occurring. During the conversation she just kept saying that she was sorry… at this point I don’t want to hear that you are sorry, I want to hear that my baby is going to be fine. She wanted me to come in the next day with our little girl’s dad to discuss the details and help us understand.

The next day we went to the Genetic Counselors office, she showed us a picture of the chromosomes that were mapped and explained that they had never seen a case like ours before. And that they are still shocked at the outcome of the results. Our little girl had something called a Robertsonian Translocation Trisomy 13, one they had never seen before because although she had 3 chromosomes on number 13 two of them were fused together. So to an untrained eye it looked like she only had two number 13 chromosomes. She couldn’t tell us what to expect other then the text book diagnosis for T13, she said these things may or may not be the case for our little girl, they just don’t know. In the end she said I had three options (1) terminate the pregnancy, (2) continue the pregnancy and she might die in utero, or (3) carry her to term and enjoy whatever time we had with her. At this point she left the room to allow us time to talk. Coming into the office we had known that it would be in the best interest for our whole family to terminate the pregnancy. When she came back in the office we gave her our choice and decided to meet with a termination counselor to get the details.

After a couple days of intense crying we met with the termination counselor she advised that we could induce labor or do a D & E. For me there was no way I could do a D & E, this is too inhumane especially being half way over with my pregnancy. So needless to say we decided to induce labor. She asked what day we would like to do it so we set it up for two weeks out on a Thursday so I wouldn’t have to miss much work and I would have some time to recoup.

17 weeks

We drove to UCSF to get a second amnio just in case the results from the first were a false positive. Everyone is in disbelief that this could be the outcome if she isn’t showing any signs of Trisomy 13. This time around the amnio hurt much worse then the first, we were also a little concerned because the amniotic fluid came out bloody instead of the pale yellow color that it is suppose to be. We waited patiently for the result of the FISH Rapid screening. I got the call at home and she told me that it was inconclusive because the sample was bloody and because the fetus is a girl they can’t tell which cells are mine and which are hers. They advised they would call back with the results in 5 days or so. When I got the call she confirmed that the results were the same as the first, our little one had T13.

Four days before we were scheduled to induce labor the genetic counselors office called me asking if we could reschedule because they didn’t get the pre-auth back from my insurance in time. I asked if we could do it the following week and she advised that they didn’t have any openings because they doctor they used was going on vacation. I told her I would call her back, something just felt terribly wrong. Someone or something out there was trying to tell me that I wasn’t making the right choice.

After some serious soul searching I decided that I couldn’t be the one responsible for killing my daughter. I understood the risks, and that the odds were stacked against her; however I needed to make a decision that I could live with. My partner and I didn’t agree at first and I understood that this would be a hard journey but I just couldn’t go through with it. I wanted to cherish any little time I had with my daughter, whether it meant in utero or out.

19 Weeks

We went and did a 3D/4D ultra sound. She looks perfect; the tech said that if we didn’t tell him that she had Trisomy 13 he wouldn’t have ever known. There are no signs of physical defects or abnormality and her organs look good.

22 Weeks

At 22 weeks we decided that we would tell my son about his sister, we weren’t sure how to approach the subject in the being because we didn’t really know how he would take it. We told him that he was going to have a baby sister and that she was “sickies”. He asked some questions and we told him that when baby sister comes out she may need to go to heaven with God. Being 4 and not completely understanding the concept of death, he asked when God would send her back because he didn’t want her to go away. This was really hard for me as a mom, loving both children so much already. I tried to explain as much as I could, in any way I could, that she may not come back however she would be an angle that would be with us always. We did another 3D/4D ultra sound the following week and took my son with us. He was so excited to see his sister and he told my step mom and my mom all about how little sister is sick but he is praying for her. Still no abnormalities detected, we are keeping our fingers crossed for a miracle.

23 Weeks

We went in to do an eco-cardiogram ultrasound to see if there was anything wrong with our little girl’s heart. Everything looks fine, nothing wrong with the flow of blood, she has all four chambers and it is pumping hard and strong, as any normal baby’s would. We left feeling a little relieved that there isn’t anything seriously wrong with her life support organ. It’s so hard for us to keep hearing that we have a perfect little girl as far as they could see but in the same sentence they still tell us she is going to die. They say T13 is T13, no matter what form it is.

29 Weeks

Just after 29 weeks we decided to do another 3D/4D ultra sound, we just can’t get enough of her and want to see her any chance we can get. She still looks wonderful, no abnormalities detected, organs look good, and she is growing like she should. For her gestational age she is in the 78 percentile for growth with is excellent especially since the doctors told us she would stop growing. She moves around constantly and is so strong. She also reacts to outside stimuli so they there is some brain activity going on, such a relief.

I am going to my OB every two weeks now to track her growth and monitor her heart beat. We’ve decided to induce labor so there are no surprises, right now we are set for April 1st 2008, if she doesn’t get too big. Big babies run in my family and my son was three weeks early and he weighed 9lbs 3oz. Towards the end of my last pregnancy I stated to develop pre eclampsia and we don’t want to go down that path again.

32 weeks.

We're continuing with regular checkups at the OB, were starting to go every week now. This weekend we scheduled a sibling class for my son at the hospital, more so just to prepare him for when mommies at the hospital and what’s going to happen while I’m there then anything else.

We have decided to name her Zoey Ella – Lee, Zoey meaning Life, Ella after my great grandmother and Lee after my grandfather.