4/7/09 - During what was to be a routine ultrasound, our doctor saw some things that were of concern, so she ordered an immediate amniocentesis. The results weren’t available until the next day. To say the least we were very worried and said a lot of prayers.When the lab called we were told that our baby is a girl. We also found out several other things.They told us that her intestines, liver and kidneys appear to be forming outside of her body in an omphalocele (a hernia at the navel), which the doctor says can be surgically corrected when she is born if she is strong enough.She also has what is called Trisomy 18, which is a chromosomal disorder. 5% of babies with Trisomy 18 survive to birth. Of those that do 50% live to two months and 5 to 10% live to one year.We are very excited to see our baby girl but we are obviously very concerned and worried. We have cried so much these last few days and have lost so much sleep lying in bed wondering how this could be God’s will. This is probably one of those instances where we will never understand. Even though we don’t understand we have not lost faith. It is what is holding us up and guiding us.Please keep Grace in your prayers as her little body is still forming. It would be a miracle if she makes it to birth. Please pray that she does. It would be a miracle if she were born with the strength to survive the needed abdominal surgery she will undoubtedly need. Please pray for her strength. It would be a miracle if she makes it to her first birthday. We need your prayers. We believe in miracles, Diane has one growing in her right now.
Comforted by God’s Grace,Scott and Diane
5/29/09 - The human body is an amazing thing, every cell, every hair, every chromosome intelligently designed by God Himself. Statistics say that only 5% of babies with Trisomy 18 survive to birth. A lot of these children are miscarried naturally through a series of events that God sets in motion within the womb. It appears that these events have been set in motion for Gracie. Her umbilical cord is not going to be able to provide everything that Grace needs to survive… it is currently… but it is diminishing. Her heart is beating strong but there is a ventricular defect. All of this and other things lead the Doctor to believe that she has weeks and not months in the womb. We are almost at week 22. If we leave her in the Diane to full term, Grace will surely die. So the plan is to monitor her situation as closely as possible and then when the time is right we will either induce or have a c-section. Then if God is willing she will have several surgeries to repair her abdomen, her little heart and her lip. Please don’t think for a second that we have given up on her or have lost faith. We have known since her diagnosis what we were up against and our hope for a miracle has not changed. It has been said that you need an impossible situation for a miracle… I think we are at that point. Our prayer has always been for her to be born alive and we ask for your prayers as well. It is amazing how one’s dreams go from soccer games, proms and watching her grow up - to praying to God that you will be able to look your daughter in the eyes, kiss her forehead and hope that she knows that you would do anything for her.
5/31/09 - Diane and I are overwhelmed by the outpouring of love and prayers for Grace. Thank you for holding us up. This will be a week of second and third opinions and trying to find what will be give Grace the best chance for a live birth. Since time is of the essence, we moved up a 3D/4D to tomorrow morning. I was going to explain to my daughter, Lacey what to expect when she saw Grace’s ultrasound because at this early stage, she won't have a lot of fat and we were told that she would look "skeletal", the herniated abdomen will undoubtedly look "abnormal" and her possible cleft lip might be pronounced. So I asked, “Have I explained how she is going to look?” She said, “I already know: beautiful.” So true!
6/1/09 - Scroll down to see the video - We had a 3D/4D ultrasound done today at a place called by the angel that owns it named Brenda. I can't say enough good things about her or the experience. Thanks to our family and friends that joined us.
6/4/09 - How do I put today’s Dr. visit into words? Last Friday the measure of the umbilical cord flow showed an A then a flat line then another A then a flat line. The flat line was measuring ZERO blood flow from Grace to the placenta. Today the graph shows an A then a VALLEY, an A then a VALLEY… the VALLEY is GOOD… the Dr. had a slight surprised look on his face when he told us that it almost read as NORMAL… I know how to put it into words… miraculous!!!
6/10/09 - Had a great week. Things seem to be going smoothly. We did another 3D/4D Ultrasound yesterday. The video from it is posted below. We have an appointment tomorrow so we should have lengths and weight to report.
6/11/09 - The appointment went well. She is in there kicking away. Her heart rate is in the normal range at 130. We just love everyone that we have come into contact with at the clinic. The nurse today was so sweet. She teared up talking to us about Grace. It's kind of hard not to... but you would think these guys see "complications" all of the time... it is nice see that they are not jaded and hardened.
6/18/09 - (24 weeks) Another appointment, another ultrasound and as the saying goes "no news is good news". The doctor we saw today felt that the cord blood flow was still looking good but that there was some “resistance”. We have ultrasounds set up weekly now to monitor her heart rate and cord flow (every other week) and at the first sign of stress or a problem we would go in for a c-section. Thanks again for keeping Grace in your prayers.
7/7/09 - (27 weeks) This is Grace's mom, Diane. I want to thank all of you for your tremendous outpouring of love, support and prayer. There are so many people that we've never even met who are praying for Grace and for us -- what an unbelievable blessing.By some counts, today marks 27 weeks into our pregnancy. I'm sure that "27 weeks pregnant" means different things to different people. To us and our baby girl, it is nothing short of a miracle. By medical standards, Grace should not have made it beyond the first few weeks. But she is alive and kicking away. She has a large hole in her heart, but it continues to beat within "normal" ranges. She has resistance problems in her umbilical cord, but from the ultrasounds it appears that she continues to grow. She has clenched fists, but she continues to open and close her hands and separate her fingers. She has a cleft lip, but she continues to smile. Most importantly to us, she continues. Last week we learned that the umbilical cord situation that presented as a problem several weeks ago and then stabilized has reversed itself again for the worse. At this point, the tests are back to showing strong resistance to blood flow through the cord. The doctors are not optimistic. We dream of holding our baby girl alive and pray that God will sustain her. We know that He is faithful and that nothing is impossible with Him.On behalf of Scott and me, again, thank you for your prayers and kindness; words cannot express the depth of our gratitude. Much love, DianeBelow in the LINK section is the video of Grace's latest 3D/4D Ultrasound at 27 weeks.
7/15/09 -- All, Last week's doctor's appointment brought the difficult news that Grace's umbilical cord situation has continued to get worse. The doctors told us that they believe we are losing her, and that there is nothing we can do.We have not given up hope; we know that God is in control. Our next appointment is tomorrow morning at 8am CST; we'd appreciate your continued prayers. Please pray that we hear a good, strong heartbeat tomorrow, and that God continues to sustain her.Thank you, and God bless.
7/20/09 - This was a good week/weekend. Thursday we had an ultrasound and Grace had a good strong heartbeat. We went in on Friday and had another 3d ultrasound and got some more amzing video of our little angel and on Sunday we went in and had Diane's pregnancy photos taken. They are posted below.
7/23/09 - It is with great sadness that I write to let you know that we have lost our precious baby girl, Gracie. This morning at a routine ultrasound we were unable to find a heartbeat. They have admitted Diane at Abbott NW and have began to induce labor. We are comforted by the thought of her being rocked to sleep in the welcoming arms of our Lord and Savior. Thank all of you for your prayers and words of encouragement.
7/25/09 - Grace Luella Peterson was born into Heaven on Friday night at 11:42. Diane suffered through nearly 27 hours of labor, pains which paled in comparison to leaving our little girl behind at the hospital. No mother should have to leave a hospital with empty arms. Just looking at Grace, you could tell that she was at peace. She is so beautiful. She never felt pain which is something I imagine any parent would wish for their daughter. We spent 3 hours with her today and 3 hours yesterday. God lined up angels at the hospital to help us throughout the night. What incredible people at Abbott NW. We already miss her terribly but we WILL see her again. We are surrounded by friends, family and love, not only at our home but on here. God bless all of you for the prayers that are holding us together.
7/27/09 - We are having a service for Grace on Wednesday July 29, at 2:00 at Lord of Life Church, Ramsey, MN (lol.org) to celebrate the 7 months that we had with her. In lieu of flowers, we set up an irrevocable trust to provide 3D ultrasounds for needy couples of children with fatal diagnoses so they can see their loved ones the way we were able to enjoy our Gracie. Donations can be sent to Sustaining Grace, USBank, 121 E Main St, Anoka, MN 55303
8/1/09 - The service on Wednesday for Grace was absolutely beautiful. It was truly all we had hoped it would be for her. Thank you to all who participated, attended and supported us from afar. We miss our baby girl terribly, but can say from the depths of our hearts that she was the most precious gift from God that we could possibly have received. The short time we had with her was SO much better than a lifetime without her. God bless all.
Scott and Diane
This is the “blog” from Grace’s prayer/support group on Facebook (search for Sustaining Grace). When Facebook made a change to groups at one point, sadly they deleted all 300+ members.
Why are we doing this? Our daughter, Grace, was diagnosed with Trisomy 18 at 14 weeks gestation. Even though we were told that only 5% of babies with Trisomy 18 make it to birth, we vowed to give her every chance possible to live. Grace fought bravely while every cell in her body was telling her to let go. After her diagnosis, she lived nearly another 16 weeks in the womb while we watched her grow through 3D and 4D ultrasounds. She was stillborn on July 24, 2009; the only times we got to see her full of life and active was during these precious ultrasound sessions.
We want to help other couples experience the joy of watching their little miracles full of energy and life. Our hope is that these videos will be the sustaining grace to help these couples make it through their difficult pregnancies as they were for us.