A couple of hours before going to the hospital today to pick up Jillian to bring her home, we received a call from Jillian's doctor at the NICU. She said that because Jill hasn't gained weight at a good rate the past few days, that she didn't think it would be wise to send her home today. Although we agree with her decision, we are understandably dissappointed. We have to remind ourselves that she is weeks (or months) ahead of schedule, so another week or so of waiting is still much better than what was expected.
Basically, Jill has been gaining weight slower than she should be. She should be steadily increasing her weight on a growth curve consistent with babies of her size and age. Instead, she has put on a few ounces here and there, but is falling behind her expected growth rate. Rather than sending her home with us only to take the risk of having her return to the NICU a few days later, we are going to have to wait until she can consistently increase her weight.
Judy and I are planners to the extreme (especially Judy). We like to have our schedules planned out days (or weeks) in advance. We have had to be more flexible the last 6+ weeks than we are accustomed to being. I had made preparations to take most or all of the coming week off of work to be at home for Jill's first week at home. Now I am looking ahead to the next week knowing that there are a couple of critical training days at work that I need to attend. Everything has worked out well since Jill's birth, so I should rest assured that God has it all planned out for the best, even better than Judy and I could plan.
Please pray that Jill will start to put on more weight and will be able to come home soon. We are getting more anxious as that day approaches.
In November 2007, our unborn daughter was found to have a condition called Congenital Diaphragmatic Hernia (CDH), which occurs in 1 out of every 2,500 pregnancies. Basically, our daughter’s diaphragm had a hole in it that had allowed her stomach, liver, and some intestines to pass into the upper regions of her chest cavity. Her chest was too overcrowded to allow her lungs to fully develop. She was given slim odds to survive and worse odds to thrive.
Our daughter, Jillian Olivia, was born in the Spring of 2008. Since her birth, Jill had two surgeries during her first year and has since thrived.
We started this site to chronicle our experiences throughout this journey and to keep our family members and friends up-to-date on Jill's condition. Now we use this site to update others on what's going on in our lives.
4 comments:
We are just amazed at this little girl's progress! We will definitely be praying for when she can come home to be with her family and what a precious moment it will be. We love you guys!
You will be looking back in 20 years....and marvel at God's timing even more than you are now.
It has been such a joy to read about Baby Jill's progress and pray for her daily.
Thank you so much for the website and including all of us in this blessing.
Love in Christ,
Henry and Patti Roybal
I'm sorry--that is very disappointing! I know you want what is best, but it's hard not to wish what you want were the best thing. :) I am very full of praise that she has been doing so much better than everyone had feared.
I'm sorry to hear that Jillian's release from the NICU has been delayed. I know how excited & nervous you both were!
I know everything is overwhelming. You all hang in there. Our family is thinking of you and hoping you are well. Little Jillian will be home soon!
Hugs, The Ruttes
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