It has been hard not to worry about Jill. She is only in the 3rd-5th percentile for weight compared to other babies her age. I recently saw a chart that shows the milk consumption babies have at different ages. According to the chart Jill was drinking the same amount of milk as a newborn to 2 week old baby (2-3 ounces per feeding). It really startled me that she isn’t drinking more. I knew the feeding thing would be hard, but I didn’t think it would be this hard. Bryan and I literally do anything we can to get her to drink more milk. Sometimes I swaddle her in a blanket to calm her down, walk around with her, and sing her the “Hokey Pokey” song just to get her to drink a little more. Needless to say, it has been such a struggle to feed her. Two weeks ago the therapist that does home visits to help with feeding had a good idea. She thought that maybe the dosage for her acid reflux medicine should be increased. So I called the doctor and she increased the daily dose. I think it has helped. The feedings have gone a little better since then. Last week she finished her first 4 ounce bottle! (Most feedings are still only about 3 ounces. An average 4-month old should drink 5-6 ounces per feeding). I keep hoping it will get easier and she will catch up in weight. Her pediatrician doesn’t think she will need to go back on a feeding tube as long as she is slowly gaining weight and stays on her growth curve. However, she would feel more comfortable if Jill jumps up to the 10th percentile. And she definitely wants her to gain more weight before this fall when the cold/flu season hits. (Ideally, I would like her closer to the 25th percentile to match the percentiles for her length and head circumference.)
Since there are still lingering health concerns (gaining weight and making sure her development is on-track), Jill has had about 2-3 doctor/therapist visits per week. You can probably imagine how burned out on doctor/therapist visits I am. Last week was her big 2+ hour NICU follow-up visit. She met with a nurse, therapist, and doctor. There weren’t any huge surprises. Her reflexes are a little immature (i.e. she still has the startle reflex, etc.). But overall, everything seemed pretty normal, which we are very grateful.
I was kind of dreading this week. Jill has appointments scheduled for Monday, Tuesday, and Wednesday. Well we just finished the Monday appointment with a new therapist and it went a lot better than I expected. She showed me how to do some exercises/massages with her mouth, tongue, and belly that should help with the feeding problems. While other medical professions have been helpful, this new therapist seemed much more knowledgeable about what was going on with Jill. I actually left the appointment feeling encouraged that things might be easier by the time Jill is six months old.
Well when we aren’t trying to feed Jill, she is an extremely happy baby. She is laughing more and more and likes to babble. And she loves to smile at everyone she sees. She has rolled over about 5 times now. She already adds a lot of joy to our family. I keep wondering what the future holds for her.
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.
1 comment:
Wow! Rolling over already! Jill is such a cutie! We can't wait to see her and the rest of you again. Randal and I miss you guys. We'll see you soon, though and Jim will be there, too!!!
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