Baby Grace

In loving Memory of Baby Grace -

Friday september 12th we were called to have a care meeting with all the doctors, a social worker and a chaplan. I thought to my self something might be bad.Sure enought the doctors made me make the biggest decison of my life. Grace had been at 100% oxygen all week and nothing they were trying was really rasing her levels to much. Thrursday I got to hold her for the first time in two weeks. I read to her and she did so good. They sadi that she was on max level of medication and respiratory therepy. They wanted us to realize that she was having brain failure and lung failure and begining to develope cist on her brain from not getting enough oxygen. They wanted us to be there if something happened to her in the middle of the night and wanted us to make the decison wether or not to make her suffer. We called of our family and this week my mom happened to go to Branson for vaction, and my dad works in Pennsylvania and my little sis lives in Dallas. SHe was baptised when my mother arive at about 3:45 pm, then all my aunts and unlces and friends came as we waited for my dad and sis to arrive. I could tell the Gracie just did not feel good and she was holding on to say goodbye to everyone. Her Oxygen dropped into the 30's and her heart rate was in the 50"s as they were preparing for Trevor and I to hold her one last time. My dad and sis arrived at 11:00 and got to spend about two hours with her. Trevor held her then I did. After alll the goodbyes adn a day full of sweet memories we took the ventilator out at 1:48 am and said our good byes to our sweet litle Grace. She went life less fast but her heart did not stop till 15 mins had past then my sweet little one went to see Jesus at 2:12 am on Saturday morning the morning of her aunt's 24th birthday. I knew she was relying on the vent when I realized how fast her heart stopped and how she went life less, I did not want her to suffer. I do have a sense of peace of things know. Her memorial was sunday night and it was so beautifull. Gracie came to me to help me realize i need to take care of my self and then I can try again when we are ready.God works in mysterious ways but I know that Grace was a blessing to our family for the short 7 weeks and 4 days that she lived.Grace Ellen Howard 7-22-08 to 9-13-08

Update from Mama on 9/8/08
We made a big move this week and know we are at Childrens Mercy Hospital so she can be closer to the Cardiologist. She went back on the ventilator and is not maintaining her oxygen levels very well. She needs surgury but they wont consider it till she is 6 lbs at least. The change has been very hard on all of us . We were getting used to the nurses and the schedules and know we have to start all over again. Please continue to pray for us.


Update from Mama on 8/29./08
She is still not doing well on her CPAP and her oxygen keeps falling a lot and they have her all the way at 100% . I was wondering if you could pass my email address on the Benjamins mom so that we could chat a little I have some questions for her. I love the isolettes bumper cards and so do the nurses. Keep us in your prayers please. I am starting to become more and more emotional as the days go on.
Chandra

Update from Mama on 8/28/08
She is 2 lbs 4 ozs and she is doing just fine they still have her on the CPAP and they have been adjusting her oxygen levels each day she changes a little.No real new news we just have to pray that she keeps gaining weight.


Update from Mama on 8/13/08
Grace had been taking a couple steps back this week. She was placed on a CPAP due to oxygen levels faling a lot and today we found out she has congestive heart failure and her heart in enlarged because it is working to hard. Please keep us in your prayers and we are riding this emotional roller coaster.
Chandra

Update from Mama on 8/7/08
Grace is 2lbs and 2 oxz and they are still increasing her feedings and will soon take out her IV if she continues to do good with her feedings. She is still having bradycardios when she forgets to breath but she is down to only about three a night. Her oxygen levels fall every once in a while due to the oxygen in her heart mixing together but hopefully she will grow out of both of them. Please continue to pray that her heart gets stronger and that the two holes heal around her due date of October.


Note from Mama -Grace was born on the 22nd of july because I developed precalmpsia and my blood pressure was really high and they had to enduce me because her heart rate went down then they took her emergency cecection at the last minute, because they did not want any more stress for her. I did not know that I had preclampsia and I guesss it was starting to get bad and it is a good thing I started bleeding a little the 17th and went to the hopital to make sure everything was ok. I was checked in and wactched untill they decided to enduce.I held her on Sunday the27th for the first time I tucked her in to my hospital gown and she was like a little papose on my chest it was so awesome, dad held her later that night and then the next day grandma did as well. I am in heaven when I hold her. I am very lucky because she is not on oxygen or a ventalator and so she is breathing on her ownand has been since the second day. I will get a picture soon for you on me and grandma holding her.I would love to share more any time. Chandra Howard

My daughter Grace was born July 22nd at 1lb 15 oz and 13 inches long. She is so small but so precious. She is at St. Lukes on the Plaza. I was just release yesterday to come home. I got to hold Grace for the first time on Sunday and she is know eating a whole tablespoon every three hours She is doing so well. Here is a picture of Grace on the day she was born.

I was told to check out this site by a friend. I want to read more about updates on others and be able to post my story as well .

Chandra Howard