Dear Friends and Family,
Today marks the one-week “anniversary” of Julia being home with her family. Tomorrow she will be 5 weeks old. This will probably be one of my last email updates. Though many of you have expressed that you enjoy receiving them (thank you for being so encouraging!), I can't help but feel a bit guilty for adding to the overcrowding of all of your “in-boxes.” I am going to be making the transition to putting Julia’s updates on her blog: http://juliaalexandrabrown.blogspot.com
I did want to let you know how her pediatrician visits went. She was seen by a random pediatrician last Friday and then she was seen by her regular pediatrician on Monday. I also took her in today to have her congestion checked out. She will have frequent visits to check her weight and to make sure her heart and lungs sound good. So anyway, the good news is that Julia got excellent reports from both pediatricians! On Friday, Julia was 7 lbs. 4 oz (she had gained an ounce since she had left the hospital just the day before.) Then on Monday, she was 7 lbs. 7 oz. She gained another 3 ounces over the weekend. Today when I took her in to the pediatrician, she weighed 7 lbs. 12 oz! She gained another 5 ounces in 3 days! This is fabulous news since she had lost small amounts of weight just over a week ago in the NICU. The doctor said her neck seemed strong and that she was focusing well and tracking with her eyes. She also said her heart and lungs sounded very strong. It was so encouraging hearing these things. One thing that is very significant about Julia’s pediatrician is that she has a 4-year old daughter with Down syndrome. So she has a lot of insight. Another praise is that the pediatrician gave me the go-ahead to extend the time between feedings at night to 4 hours as long as I am fitting in 8 feedings in a 24-hour time period. This was amazing news to me because that means I get an extra hour of sleep between feedings at night. So now, I really only have to get up once in the middle of the night. I feed Julia at 11:00pm, 3:00am, and then 7:00am. Monday night was the first night we implemented this and it made a huge difference.
Julia has been having more frequent and longer periods of awake time in the past few days. This is so exciting to see. She will focus on my face from time to time, which I love. She also loves lying on her activity mat and to look at the toys dangling above her. She also enjoys looking at the light coming through the blinds in the family room.
How am I doing? I'm doing okay... a new baby is always exhausting. I did know that, but one always forgets (otherwise people would never have more than one child.) I don't do well on sleep deprivation. It is hard having my 4 year old to divide my time with- but in reality I'm not dividing much my time at all. Really, I spend very little time with Mattie these days. (I'm grateful to have grandparents here visiting!!!!) I feel rather guilty about that. But I try to remind myself that things will start getting easier eventually. We have only had Julia home for a week! I just feel like I can barely keep up with the schedule of feeding Julia, pumping, and then doing other basic things like EAT, or get dressed! (I’d forgotten what a luxury a shower can be!) If it weren’t for being stuck on the couch pumping, I’d never get these email updates done. (I’ve been working on this one for 4 days now.) I think I forgot how little I got done when Mattie first came home from the hospital. I'm just so used to getting things done. I currently have laundry in the dryer that has been sitting there 3 days now. Oops. :)
The main thing that is discouraging for me is the eating thing. I generally hate pumping and I'd really like to breastfeed. But right now we're just trying to get her to take a bottle. Julia is not very interested in breastfeeding right now. She'll eat some of the bottle (like 1/4 to 1/2) and then we have to put the rest down the NG tube. I'd like to get that dumb tube out! But she needs it, of course. It's just that she is so up and down with her success with the bottle. Some feedings she sucks great. Others, she gags, is not interested at all, or she throws some of it back up. Again, I know I need to be patient and not get discouraged. (Maybe I’m just selfish and I just want to stop pumping!) I am suspicious that her congestion is greatly impacting her eating so the pediatrician today went ahead and prescribed an antibiotic as well as some baby Zantac (reflux medication) .
The other thing that I scared about but generally am trying to be hopeful is thinking about Julia's overall development. I know that over time, that fear will become less as I develop my relationship with her more. I just want to be able to have a two-way relationship with her. I want her to walk, talk, eat, smile, laugh, and think! As I said, now that she has arrived and I can see her, I am more hopeful for those things. I am more hopeful for her future. Not that I wouldn't love her if she never did those things, it just would make me sad. I can’t help but want the most for Julia. I want her to someday be as independent as possible and be all that she can be. I was glad she got a good and optimistic report from her pediatrician. I was very fortunate in finding one that is not only close by, but also has a 4 year old daughter with Down syndrome.
Generally, though, I see Julia as a sweet little baby... but not just any other baby, MY baby. The baby that God gave us. I don't see the Down syndrome too much at all. I love her, snuggle her, kiss her, talk to her, and rub her soft little head every day. I wouldn’t be honest if I didn’t say that I do get a little sad from time to time that Julia has Down syndrome. Any sadness, however, is mostly due to the fear of the unknown not because of who Julia is.
So we will continue to take each day one hour at a time. That’s really all we have, anyway. We have this moment in time and that’s all. It is a hard lesson that Julia is going to teach me. It may take me a lifetime to learn it.
Prayers:
• For Julia to continue to gain weight and grow stronger.
• Bottle feeding and breast feeding: for patience on my part and for Julia to become more interested in both bottle and breast feeding. (I may seek out lactation help.)
• That I can keep up the feeding/pumping schedule and not get too discouraged by it.
• For Julia’s horrible congestion. I suck thick snot out of her nose 4-5 times a day. And since babies can not breathe through their mouths, it is important her nose stay clear! We still don’t totally know what the snot is from. The pediatrician went ahead and prescribed Julia an antibiotic today. Pray that it works!
• That Bob and I would trust God with our lives and with the lives of Julia and Mattie. And that we would trust God with the future.
Praises:
• For Bob’s parents being here and being such a fabulous distraction for Mattie and a help to us.
• For Julia’s positive check up with the pediatrician and that her heart and lungs still sound strong and clear.
• That I can get more sleep at night now that I can stretch feedings to 4 hours at night.
• For all the meals that people have been bringing us. Since cooking is not my passion, the meals have been such an appreciated gift!
• For the amazing support of our family and friends.
We want to wish you all a very blessed Christmas. We hope you can cherish the time with your family this year. We will certainly be thankful for the time with our family this Christmas as we reflect on the most miraculous birth of all- the birth of Jesus.
Much love to you all,
Val, Bob, Mattie, and Julia Brown
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