Today I have been given even more information to consider, some from my OB and some from a Christian lady (friend of a friend) who had a baby with Trisomy 13 almost 10 years ago who lives right here in San Diego.
At my OB visit today, no problems were found with the baby or my own health. However, certain recommendations my OB gave me only several weeks ago have been now overridden because of reasons given to her by the UCSD Genetic Specialist (the one with the poor bedside manner I mentioned in my past post). Originally, my OB recommended me to deliver at a specialized hospital with a level 3 neonatal intensive care unit (NICU). Today, she says I should deliver at Scripps which only has a level 2 neonatal unit which isn’t really prepared to care for a baby with Samuel’s condition. She also acknowledged the UCSD doctor’s recommendation to not wear a fetal heart monitor or do more follow up exams on Samuel’s heart. But I did sense that if I wanted to push things to go back to the original plan, we could. I left the visit today feeling somewhat angry and more confused than ever.
Tonight my husband and I decided to make a phone call to a woman we learned had a baby girl with Trisomy 13 almost 10 years ago and talk to her about her general experience with doctors and labor & delivery decisions their family made. We got the referral from Dan’s sister Shiela and had a good feeling she would give us some well needed perspective from a Christian standpoint on some of these big upcoming decisions we are about to face. In summary, she left everything in God’s hands and had a remarkable testimony of faith. Her and her husband chose not to take any heroic, aggressive means (surgery-wise) and let God’s will be done however it was to play out. It was also their hope their daughter would be born alive and they were fortunate to have this happen! Their little girl survived longer than any other Trisomy 13 case in that hospital and went home with the family 1 week later. She lived for 7.5 weeks (much longer than the median age) and finally went home to Jesus. Her story left me feeling hopeful again. I was able to remember again that I am not in control (this has been a huge struggle for me) and that alone is giving me back the peace I need to allow the remaining of my pregnancy to take place as it should and not be so worked up over every little minor detail of Samuel’s condition. In some ways (I told my husband this tonight) I feel like I am my own worst enemy. I have a constant battle in my head wanting to know every single little detail, researching the severity, wanting to know all my options, wanting to do the right thing…. yet there is no peace about any of this! I seem to be making myself stir crazy when all I probably need is a lot of prayer and ability to focus that everything will be just as it should in God’s timing.
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Josi,
ReplyDeleteYou, your child and family will be in our prayers.
I'd be happy to offer you any support you need. I am also in So. Calif.
Please check out the Livingwithtrisomy13.org website. Presently we have 90+ living survivors with trisomy 13 and over 200 Treasured Memory stories each family embracing what was before them.
Our daughter surprised us at birth with her diagnosis and medical issues. We take one day at a time. She is now 9 yrs, and while she is severely delayed, she is the JOY in my day.
ThereseAnn,mom to Natalia
http://livingwithtrisomy13.org/album14.htm
Josi,
ReplyDeleteMy Samuel will be 11 in November. He is also on the livingwithtrisomy13 website. We did not have a prenatal diagnosis, and although sometimes I wish I had so we would have known he would need a special care nursery, it was really a blessing. When he was diagnosed at 7 weeks, we decided to do everything we could to help him live a happy life and were very aggressive in treatment. Today he is happy, walks independently and is such a joy to our family and community. We will be praying for you and your little Samuel. God will give you the peace you are looking for...His grace and strength will see you through
It's like we are Adam and Eve again in the garden... struggling with wanting to know only what He knows... we can look to Mother Mary as a great example of the New Eve and how her 'Fiat' for God's will to be done is the better choice.
ReplyDeleteI am sooo glad He worked through Shiela and the other Christian women. I love you guys. My heart and prayers with you.
I really commend you and Dan for doing the right thing.....God's will. Just remember to listen carefully and He will direct you. No matter what you do, you cannot change God's will. Everyone has crosses to bear throughout their life's journey and your cross has been some of the behavior by the medical staff. You and Dan have taken the right approach to Samuel. Just enjoy every moment you are given with Samuel.
ReplyDeleteRemember the prayer: Lord give me the courage to change things I can, the strength to accept that which I cannot change and the wisdom to know the difference. Although this is the AA prayer, and I am not an alcoholic, I try to live by this which helps me through trouble times. MOM
I'm glad you were able to touch base with Lily. Your experience will be just that - entirely and uniquely yours.
ReplyDeleteI pray for you everyday and hope His intention and plan for Samuels life will become very evident to you and most importantly, that it also brings you the gift of peace and understanding.
Take care of each other - love you guys so much.