[tri-med] Re: trisomy 18, omphalocele - our story

Wow I wish I could say something to make everything better for you.  You are 
unfortunate because you know before you get to meet your little one.  What I 
mean by that is that I didn't find out until the day before my son was born 
that there was any problems with him.  I was 28 weeks gestation and due to a 
surgery the placenta stopped working.  They suspected through an ultrasound 
that he might be t-13.  I had to make a decision to allow them to test the 
chromosomes through the cord.  If he did have it then they were going to induce 
labor and "allow nature take it's course" - all him to die.  At that point they 
estimated he would have another 2-3 days left inside of me.  (I am a single mom 
going through all of this alone).  The next morning when they did another 
ultrasound they found that there was not enough time to test the chromosomes.  
I had to make the decision right then and there to have a c section or allow a 
baby to die when I didn't know if he had t-13 for sure.  

I can tell you that I wasn't suppose to be able to have children.  I had almost 
lost him so many times due to problems with me carrying.  That night the day 
before he was born I made them turn off the sound of his heart beat.  They had 
told me that he wouldn't survive the birth if he did have it.  I was just 
devistated.  I felt like I had already lost him.  I just cried and sobbed all 
night.  I made my sister -n-law promise to take all the baby items out of my 
apartment before I got home from the hospital.  
Logan was born on 12/04/01 at 10:30 am.  He was 1 lb 11 ounces and beautiful!  
I was praying so hard while they were operating that I didn't even realize that 
he was out at 1st.  When they were ready to take him to the NICU I asked to see 
him.  He used every ounce of strength he had to open his eyes to my voice and 
look at me.  He was turning his neck and head when they wheeled him away to 
watch me.  I was hooked!!!!!!  I was so in love with him at that moment that I 
would have moved heaven and earth to keep him with me.
I am not going to go through every little detail of what happened but he was 
almost 2 weeks old when the final results came in (1st were that he was fine 
and then came back there was a mistake that he still had it).  Logan is mosaic. 
 Up until that point in time they treated him like any other preemie baby they 
took care of.  But once the results were in I heard over and over again that it 
was useless and I was making things more difficult.  Logan spent 129 days in 
the NICU.  He was sent home to die.  I had requested and then demanded that he 
be transferred to a hospital that had more experience with special needs 
children.  The NICU that he was in gave such a bad report about him that the 
one close hospital wouldn't take him (the same one now that has saved his life 
time and time again).  The others they talked me out saying that he wouldn't be 
able to take the trip - too rough on him.
I can only tell you what was right for us.  But comfort care was NEVER an 
option for me.  I say this because Logan has coded more then once and with in 
10 min's he was smiling like it never happened.  The last time he coded he was 
sent to a different hospital (he was at home with me) and the 1st hospital 
didn't have a PICU.  But do you know that 10 days after being in the new 
hospital that all life threatening issues where gone.  All apnea's and brady's 
were done.  Logan had a reacurring infection that the 1st place kept treating 
with the same antibodic's - excuse the spelling errors.  The second place used 
med's that were NOT resistant to the infection.  
Logan is now almost 11 months old.  He is over 12 lbs and still on oxygen.  BUT 
we are getting ready to lose the o2.  Logan smiles, giggles, all sorts of 
stuff!  He knows that he is loved beyond reason.  I just went back to work and 
for a good half hour to an hour after I get home he punishes me for leaving 
him.  He won't even look at me.  It killed me at 1st because we are so close.  
He will tune others out but never me.  I prayed long and hard for a decision on 
what to do when Logan was at his sickest.  God showed me time and time again 
that Logan is meant to be here.  I know that so much of this will not make 
sense until after your baby is born.  HOWEVER before Logan was born I was ready 
to give up on him.  I was willing to listen to the DR's. and let him go.  After 
we spent a few short days with him giving up was not an option.  Logan has 
saved me.  I appreciate every little thing he does and about him.  I know that 
when he looks at me  that I am all that he needs.  He has touched so many many 
peoples lives just by being here.  I took him into work and my HR person said 
she felt like she was looking in the eyes of God.   I would suggest to you to 
come up with a plan but don't set it in stone.  When your little one makes her 
way into the world you might change your mind.
I would also suggest you do some research on the internet on disabled infants 
right to life and DNR's.  Just make sure you know the difference between 
comfort care and a DNR.  There is a difference.  And even though I am alone 
with the responsibiltity of Logan I wouldn't change a thing.  I wouldn't want 
anyone but him.  Logan is such a happy and content baby.  Just my singing or 
loving him is enough to make his whole day.  I am more then happy to send you 
pictures of him.  Please keep us updated and don't feel as though anyone here 
will judge you!  Tina & Logan
 
 JMSK8RPRO@xxxxxxx wrote:
Hi Joel & Becky,
Welcome! I, too, am sorry you had to find this wonderful group of friends. 
My husband, Larry, and I have not been involved for a long time. We joined 
the group in July. We do not have any experience with omphalocele however, 
we do have with full T-18.

Our situation was an early diagnosis of T-18 and a lot of genetic 
counselling. We were told to just provide comfort care. We did some 
investigating and decided on the comfort care at the begining. Our little 
Philip was born March 18, 2002 at 4lbs 12 oz. He was beautiful. He was in 
the NICU for a week and came home on a feeding tube and a small dose of 
oxygen. We requested an Apnea monitor and Oximeter to monitor his oxygen 
level and if he stopped breathing. We wanted to be with him at the end. We 
had him in hospice care. Everyone was wonderful. Over the next 6 months he 
defied all the doctors. He continued to grow and at 2 months pulled out the 
feeding tube and would not let us put it back in!!
He had several heart problems diagnosed before birth and after birth they 
were revised. The biggest problem was a large VSD (hole in the heart). We 
finally found a surgeon that was willing to treat his heart. September 19th 
he underwent open heart surgery. The surgeon said it was a complete success. 
He was pleased with the immediate results of the surgery. However, the next 
day, complications set in and within 3 hours we lost our precious little 
Philip. We are still working with the doctors so they will continue to treat 
these babies. There does seem to be a general (not complete) attitude in the 
medical community to treat these babies like they will ALL die. If they do 
not treat them, of course they will die. They like to make the decision of 
treatment on their own by not giving complete information, or not researching 
and communicating with the parents. Many of these babies do not survive long 
due to central apnea or other undetected problems.

From what we have learned, my suggestion is to research as much as you can. 
Question the doctors endlessly. Talk to several doctors. Search your 
feelings. Then determine how far you want to go. In our case, once Philip 
started growing, gaining weight, and getting stronger, we changed our minds 
on the extent we were willing to go for him. You lovely little girl will 
tell you how far to go.

It did not take us long to figure out that our Philip responded to love and 
prayer. Whatever your decision, hold her as much as possible. Let her feel 
your love. She will respond. It is easy to try not to get close for fear of 
losing these babies. Do not let that stop you. The joy they bring is 
immeasurable. I would not change a thing we did. In Philip's short life, he 
accomplished more and touched more people than some adults do their entire 
lifetime. He brought our blended family together, and was touched and loved 
by an entire community. They have all said they will never be the same after 
Philip. They could see the love of God just by looking into his eyes.

We will be praying for you. 

Jackie wife to Larry, mom to Tina 11, Tony 9, Philip ^!^ 6mo, and Calico the 
cat.
Building ___ooOOoo__ Rainbows
www.trisomyonline.org
Families Helping Families On-line



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