Enjoy the pictures! For most of them she's wearing a pair of my favorite overalls from when Mattie was a baby.
Friday, December 30, 2011
Julia is 6 weeks today
Julia went to the pediatrician today. She is still 7 lbs 12 oz. It would be good if she could gain a bit more weight since she will need to be a certain weight to have her heart surgery. This morning, we took out her NG tube so that we could get a new one put in when we saw the pediatrician (I ended up putting it in myself!) I decided to take advantage of Julia not having a tube in her nose to get some pictures of her. She is still horribly congested despite the 8 days of antibiotic and she is still not interested in bottle feeding or nursing whatsoever. She will see the occupational therapist and the cardiologist next week.
Enjoy the pictures! For most of them she's wearing a pair of my favorite overalls from when Mattie was a baby.
Enjoy the pictures! For most of them she's wearing a pair of my favorite overalls from when Mattie was a baby.
Wednesday, December 28, 2011
"Julia is perfect for our famiy"
Today, while Julia was swinging in her swing, Mattie walked up to her and declare to me, "Julia is perfect for our family. Mommy, Julia is perfect for our family." Then after looking at her a little while, she said again, "Ahhh, she is perfect."
It brought tears to my eyes. Though it is difficult to admit, there are moments I struggle to think of Julia as "perfect." There are times I really struggle with her having Down syndrome. Times when I cry out to God asking, "Why did our daughter have to be born with Down syndrome?" This was what I needed to hear to remind me that this is how God sees Julia- perfect! God sees her as perfect for our family. He knew her name before she was even born. I prayed that God would give me eyes and the heart to see Julia as "perfect for our family." She is a beautiful little girl. And I love her. I don't want to be sad about her having that extra chromosome.
James 1:17 "Every good and perfect gift is from above, coming down from the Father of the heavenly lights..."
It brought tears to my eyes. Though it is difficult to admit, there are moments I struggle to think of Julia as "perfect." There are times I really struggle with her having Down syndrome. Times when I cry out to God asking, "Why did our daughter have to be born with Down syndrome?" This was what I needed to hear to remind me that this is how God sees Julia- perfect! God sees her as perfect for our family. He knew her name before she was even born. I prayed that God would give me eyes and the heart to see Julia as "perfect for our family." She is a beautiful little girl. And I love her. I don't want to be sad about her having that extra chromosome.
James 1:17 "Every good and perfect gift is from above, coming down from the Father of the heavenly lights..."
Monday, December 26, 2011
Hopes and concerns
Concerns:
Gagging/choking: In the past couple of days, Julia has been lying all by herself on her play mat either sleeping or just staring at the toys dangling over her and she starts to gag out of nowhere. The first time we thought it was because she was spitting up what she just ate. But tonight, it happened right before a feeding just out of the blue. It is very scary. Her face turns very red and she struggles to breathe for several seconds until she finally gags and catches her breath. I'm not sure what is going on. She does this same gag kind of thing when she is trying to suck on a bottle from time to time. It's like something is going down the wrong pipe and she is getting fluid in her lungs and not down her esophagus. One weird thing is that she almost always gets hiccups after one of these episodes.
Snot: Julia has been on antibiotic for 3-4 days now and she still has yucky green snot that I have to suck out of her nose. I'm not sure if the antibiotic has done anything at all to help her congestion. This concerns me.
Bottle feeding/breast feeding: I am worried she will never breast feed. She has kind of regressed in her bottle feeding, too. I'm hoping to talk to an occupational therapist soon. She has an OT appointment in early January but I hate to wait that long.
Hopes:
Alertness: Julia continues to have longer periods of alert time. She is really beginning to focus on faces and look right into my eyes. I love it. She can also track objects pretty well when they are dangled over her head. I hope this alertness is a good sign.
Smile: One of my biggest hopes right now is that I will get to see a smile one day soon. That would make me so incredibly joyful!
Gagging/choking: In the past couple of days, Julia has been lying all by herself on her play mat either sleeping or just staring at the toys dangling over her and she starts to gag out of nowhere. The first time we thought it was because she was spitting up what she just ate. But tonight, it happened right before a feeding just out of the blue. It is very scary. Her face turns very red and she struggles to breathe for several seconds until she finally gags and catches her breath. I'm not sure what is going on. She does this same gag kind of thing when she is trying to suck on a bottle from time to time. It's like something is going down the wrong pipe and she is getting fluid in her lungs and not down her esophagus. One weird thing is that she almost always gets hiccups after one of these episodes.
Snot: Julia has been on antibiotic for 3-4 days now and she still has yucky green snot that I have to suck out of her nose. I'm not sure if the antibiotic has done anything at all to help her congestion. This concerns me.
Bottle feeding/breast feeding: I am worried she will never breast feed. She has kind of regressed in her bottle feeding, too. I'm hoping to talk to an occupational therapist soon. She has an OT appointment in early January but I hate to wait that long.
Hopes:
Alertness: Julia continues to have longer periods of alert time. She is really beginning to focus on faces and look right into my eyes. I love it. She can also track objects pretty well when they are dangled over her head. I hope this alertness is a good sign.
Smile: One of my biggest hopes right now is that I will get to see a smile one day soon. That would make me so incredibly joyful!
Sunday, December 25, 2011
Julia's 1st Christmas
Julia made her first social debut at the Christmas Eve service at PBCC last night. She was decked out in her sister Mattie's Christmas dress (I was so excited it fit since Mattie was 3 month old when she wore it.) Julia was very well behaved during the service and slept through the whole thing. However, she has learned that if she fusses in her car seat, then we will hold her. So that's what we did. No complaints here.
Julia also had a pretty great night of sleep (she knew Santa was still watching to see if she was going to be naughty or nice!) Today was the first time that our family woke up at our own house on Christmas morning (ever since Bob and I got engaged.) Luckily for us, we are also joined by Grandma Sally and Papa Pat. Julia had a new doll in her stocking from Santa.
After opening stockings, we all gathered for a yummy breakfast. We had Belgium waffles, maple syrup, strawberries, real whipping cream, and bacon. (Very low calorie! haha)
We cleaned up breakfast and eventually gathered in the living room to open Christmas gifts. Mattie helped open most of Julia's gifts. Julia got some cute clothes, a couple of Christmas ornaments, a stuffed animal lamb that makes soothing noises, a stuffed animal elephant, and some books.
We snacked and hung out for the rest of the day. Around 4:30 PM, we sat down and had a wonderful and delicious Christmas dinner of ham, broccoli, mashed potatoes, and cranberry-apple compote. There was pumpkin pie and Bob's sister's fruit cake (family recipe and tradition) for dessert. We were all stuffed and satisfied. A wonderful day. (The roses are from Mattie. She brought them home to me from the farmer's market.)
Friday, December 23, 2011
Julia's pedicatrician visits- Email update 12/22
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
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
Sunday, December 18, 2011
Happy 1-month birthday, Julia!
How big is she? 7lbs 4 oz.
What does Julia like to do most? SLEEP! (I'm so jealous!) It is torturous waking her up (and me up) in the middle of the night to feed her.
What does she eat? Julia eats a cocktail of 62mL of breast milk with Enfamil formula mixed in for extra calories. She primarily eats through her NG tube and a Dr. Brown's bottle but we're also slowly (very slowly) staring to work on breastfeeding. We think she prefers straight breast milk much better than the cocktail since she tends to drink more of her bottle when it is straight breast milk. Her interest in drinking from a bottle varies a lot. This is one of the more frustrating things.
Funny things about Julia:
* She often will just open one eye to look around. She is the one-eye-wonder!
* She makes these little whimpering noises from time to time.
* She has the longest little tongue in the West and she's not afraid to stick it out at you!
* She will tell you she's done eating from the bottle when she purses her lips tightly together and won't budge to let you put the bottle back in her mouth.
* She will give me little smiles from time to time in her sleep. It makes me so happy to see glimpses of what her smile will look like.
* She is very interested in the "activity gym" that I put on the floor. There are little toys that dangle from arches that criss-cross over the mat. She likes to look at them.
* She is *very* ticklish on her feet.
What does Julia like to do most? SLEEP! (I'm so jealous!) It is torturous waking her up (and me up) in the middle of the night to feed her.
What does she eat? Julia eats a cocktail of 62mL of breast milk with Enfamil formula mixed in for extra calories. She primarily eats through her NG tube and a Dr. Brown's bottle but we're also slowly (very slowly) staring to work on breastfeeding. We think she prefers straight breast milk much better than the cocktail since she tends to drink more of her bottle when it is straight breast milk. Her interest in drinking from a bottle varies a lot. This is one of the more frustrating things.
Funny things about Julia:
* She often will just open one eye to look around. She is the one-eye-wonder!
* She makes these little whimpering noises from time to time.
* She has the longest little tongue in the West and she's not afraid to stick it out at you!
* She will tell you she's done eating from the bottle when she purses her lips tightly together and won't budge to let you put the bottle back in her mouth.
* She will give me little smiles from time to time in her sleep. It makes me so happy to see glimpses of what her smile will look like.
* She is very interested in the "activity gym" that I put on the floor. There are little toys that dangle from arches that criss-cross over the mat. She likes to look at them.
* She is *very* ticklish on her feet.
Thursday, December 15, 2011
Julia comes home from the hospital
One last feeding in the NICU
Ready to go in the carseat!
Mattie opens her gift from Julia: a new baby doll and a Big Sister t-shirt
Julia is also greeted by Aunt Reidy and cousins Sarah and Hetty via Skype.
Mattie feels much more comfortable holding Julia at home
Ready to go in the carseat!
Mattie opens her gift from Julia: a new baby doll and a Big Sister t-shirt
Julia is also greeted by Aunt Reidy and cousins Sarah and Hetty via Skype.
Mattie feels much more comfortable holding Julia at home
Julia is HOME! Email update 12/15
Dear Friends and Family,
Well, it has been a roller coaster. Every day, Julia’s discharge would get pushed back another day or two. Julia had to go back up to the NICU the day after I wrote my last update because they put a PICC line in her to administer antibiotics. Her veins were too small to get an IV in (that’s my fault because I think my veins are also difficult to get an IV into! She got my veins.) They were afraid she had a bacterial infection… but she didn’t. So after 2 days they stopped antibiotics and she came out of isolation. I was so happy about that because I could hold her without wearing a robe, gloves, and face mask! The day she came out of isolation I think I spent an hour just touching her head and face and kissing her. Nothing is worse than not being able to touch or kiss your sweet baby. Her reflux test came back normal. But the nurse was a bit skeptical because it was almost too normal. Most babies reflux a bit. They ended up reducing the quantity of milk given to her each feeding and increasing the amount of formula given to increase calories. (They wanted to reduce fluid so that she didn’t end up with too much fluid in her heart or lungs.) However, she started losing small amounts of weight. This was quite a mystery since her calorie intake was higher. So they didn’t want to send her home if she was losing weight. Then her sodium levels dropped slightly due to her being on the diuretic. So they needed to figure out how much sodium medication to give her to balance her out. Again, more delay. Meanwhile she has stayed in the NICU for monitoring instead of going back down to the Intermediate Intensive Care Nursery. But the last couple of days, she has been improving in all areas. Her weight increased and she has been looking pretty good. The nurses have been working with me to teach me everything I would need to know for going home. I passed all the tests! Both Bob and I have successfully inserted the NG tube down her nose into her stomach. I have learned to use a stethoscope to listen to her stomach as I push air down her NG tube into her stomach to ensure the tube is in her stomach (I have to listen for this very subtle gurgle sound which is the air passing into her stomach… not easy!) I have gavage-fed her several times. As well as the other various normal things they go over with you to make sure you know how to care for a baby. So yesterday, they told me that Julia was set to go home today. I was cautiously hopeful…
But today, she came HOME! It was very strange putting her in the carseat and carrying her out of the hospital! I felt like I was “stealing” her! I also felt we should move quickly lest they change their minds and ask us to come back! Haha! The car ride home was a bit nerve wracking since I could not see Julia as I was driving (Bob was in his car since he met me at the hospital.) Every stop light (and it seemed that I hit every one!) I would listen to make sure Julia was still breathing! But we arrived safely home. We were greeted by Mattie, Grandma Sally, and via Skype: Bob’s sister and 2 kids. Mattie was very excited to have her sister home. She wanted to hold her (which she didn’t want to do in the NICU) and kiss her and help with every little thing like feeding her or changing her diaper. Julia also brought home with her a gift for her big sister: a baby doll and a “Big Sister” t-shirt. And how did Julia do? Julia was the most awake I have EVER seen her! She was awake from probably 3:30 to 5:30. Her eyes were wide open and she was looking around everywhere. I think she was also happy to be home! I also tried breast feeding at her 5:00 feeding and she seemed to latch on and nurse for a good 15 minutes or so. So there is hope for breastfeeding! I’m just glad to have her home so we can work on it several times a day. She is on a tight schedule of eating every 3 hours around the clock. So we won’t be getting much sleep for a while. I also have to squeeze in pumping after feedings. But as soon as she starts gaining weight consistently, we’ll hopefully be able to go longer stretches at night. I’ll be taking Julia to the pediatrician tomorrow and on Monday. She’ll be going quite often at the beginning so she can be monitored closely. She will also see the cardiologist in the next week or two for her heart to be monitored as well.
Prayer Requests:
•Julia consistently gains weight
•Julia continues to improve on breast feeding and taking the bottle (so she can eventually have her NG tube removed.)
•Julia’s heart to remain stable so she can have a month or two at home to get stronger before surgery
•For strength and endurance for Bob and Val as they launch into the season of sleep deprivation
•Patience and persistence for Val in working with Julia on eating- that I don’t get too discouraged
•Transition for Mattie as she now has to share her parents with her sister
Praises:
•For Bob’s mom, “Grandma Sally” to be here. She is a fabulous distraction for Mattie
•That Julia did indeed get to come HOME today!
•That Julia seems to be doing well so far at home. (I think she’s happy!)
Thanks for keeping us in your thoughts and prayers! I’ll keep you updated on how Julia is doing. I’ll also be posting more pictures to Julia’s blog in the next day or so. So check it out.
Much love to you all!
Val, Bob, Mattie, and baby Julia
(We’re finally all together as a family!)
Well, it has been a roller coaster. Every day, Julia’s discharge would get pushed back another day or two. Julia had to go back up to the NICU the day after I wrote my last update because they put a PICC line in her to administer antibiotics. Her veins were too small to get an IV in (that’s my fault because I think my veins are also difficult to get an IV into! She got my veins.) They were afraid she had a bacterial infection… but she didn’t. So after 2 days they stopped antibiotics and she came out of isolation. I was so happy about that because I could hold her without wearing a robe, gloves, and face mask! The day she came out of isolation I think I spent an hour just touching her head and face and kissing her. Nothing is worse than not being able to touch or kiss your sweet baby. Her reflux test came back normal. But the nurse was a bit skeptical because it was almost too normal. Most babies reflux a bit. They ended up reducing the quantity of milk given to her each feeding and increasing the amount of formula given to increase calories. (They wanted to reduce fluid so that she didn’t end up with too much fluid in her heart or lungs.) However, she started losing small amounts of weight. This was quite a mystery since her calorie intake was higher. So they didn’t want to send her home if she was losing weight. Then her sodium levels dropped slightly due to her being on the diuretic. So they needed to figure out how much sodium medication to give her to balance her out. Again, more delay. Meanwhile she has stayed in the NICU for monitoring instead of going back down to the Intermediate Intensive Care Nursery. But the last couple of days, she has been improving in all areas. Her weight increased and she has been looking pretty good. The nurses have been working with me to teach me everything I would need to know for going home. I passed all the tests! Both Bob and I have successfully inserted the NG tube down her nose into her stomach. I have learned to use a stethoscope to listen to her stomach as I push air down her NG tube into her stomach to ensure the tube is in her stomach (I have to listen for this very subtle gurgle sound which is the air passing into her stomach… not easy!) I have gavage-fed her several times. As well as the other various normal things they go over with you to make sure you know how to care for a baby. So yesterday, they told me that Julia was set to go home today. I was cautiously hopeful…
But today, she came HOME! It was very strange putting her in the carseat and carrying her out of the hospital! I felt like I was “stealing” her! I also felt we should move quickly lest they change their minds and ask us to come back! Haha! The car ride home was a bit nerve wracking since I could not see Julia as I was driving (Bob was in his car since he met me at the hospital.) Every stop light (and it seemed that I hit every one!) I would listen to make sure Julia was still breathing! But we arrived safely home. We were greeted by Mattie, Grandma Sally, and via Skype: Bob’s sister and 2 kids. Mattie was very excited to have her sister home. She wanted to hold her (which she didn’t want to do in the NICU) and kiss her and help with every little thing like feeding her or changing her diaper. Julia also brought home with her a gift for her big sister: a baby doll and a “Big Sister” t-shirt. And how did Julia do? Julia was the most awake I have EVER seen her! She was awake from probably 3:30 to 5:30. Her eyes were wide open and she was looking around everywhere. I think she was also happy to be home! I also tried breast feeding at her 5:00 feeding and she seemed to latch on and nurse for a good 15 minutes or so. So there is hope for breastfeeding! I’m just glad to have her home so we can work on it several times a day. She is on a tight schedule of eating every 3 hours around the clock. So we won’t be getting much sleep for a while. I also have to squeeze in pumping after feedings. But as soon as she starts gaining weight consistently, we’ll hopefully be able to go longer stretches at night. I’ll be taking Julia to the pediatrician tomorrow and on Monday. She’ll be going quite often at the beginning so she can be monitored closely. She will also see the cardiologist in the next week or two for her heart to be monitored as well.
Prayer Requests:
•Julia consistently gains weight
•Julia continues to improve on breast feeding and taking the bottle (so she can eventually have her NG tube removed.)
•Julia’s heart to remain stable so she can have a month or two at home to get stronger before surgery
•For strength and endurance for Bob and Val as they launch into the season of sleep deprivation
•Patience and persistence for Val in working with Julia on eating- that I don’t get too discouraged
•Transition for Mattie as she now has to share her parents with her sister
Praises:
•For Bob’s mom, “Grandma Sally” to be here. She is a fabulous distraction for Mattie
•That Julia did indeed get to come HOME today!
•That Julia seems to be doing well so far at home. (I think she’s happy!)
Thanks for keeping us in your thoughts and prayers! I’ll keep you updated on how Julia is doing. I’ll also be posting more pictures to Julia’s blog in the next day or so. So check it out.
Much love to you all!
Val, Bob, Mattie, and baby Julia
(We’re finally all together as a family!)
Monday, December 12, 2011
Julia has eye peepers!
The past few days it seems as if Julia has had longer periods that she is more alert. This is very encouraging.
She also has sweet little ears! You can see her red hair in this picture as well.
She also has sweet little ears! You can see her red hair in this picture as well.
Wednesday, December 7, 2011
Julia email update 12/7
Dear Friends and Family,
I just thought I’d update you some more on Julia’s progress. Today is her actual DUE DATE and she’s almost 3 weeks old (this Friday!) It’s been a bit disappointing because I figured that she would have been able to come home by now. But alas, she is still in the Intermediate Intensive Care Nursery. It seems as if her discharge is always “3 or 4 days away.”
A few things have come up, however, that keep her captive. Her feedings are improving, but still an issue. She actually “nippled” (or taken by bottle) 3 whole bottles worth (60-65 mL) in the last 4 or 5 days. On average, she nipples half her bottle at a time and then the rest of the bottle is gavaged (which means that she takes the rest down a tube that goes from her nose into her stomach.) Because Julia will most likely go home with a tube in her nose, Bob and I have had to learn how to insert the tube into her nose and slide it into her stomach. It is called an NG tube. It is not fun! Julia often cries, gags, and squirms during this process. It is torturous. The most frustrating thing about Julia’s eating is her inconsistency. She “can” do it. But she is often so sleepy and lethargic, that she poops out after a short while and won’t eat anymore after that. I think that over time, as she matures, she will “wake up” more and more and I think her eating will greatly improve.
The other issue that the doctors are trying to diagnose is that Julia is often very congested in her right nostril. They are not sure if it because Julia has a cold or if it is because she has reflux and milk is coming back up and getting into her nose making it congested (or both!) So when I went to the hospital yesterday, she was in isolation because they had done an X-ray of her lungs and did a swab test to test for infection. She should come out of isolation this morning if everything is clear. Because of Julia’s heart condition, they are concerned about her getting fluid in her lungs and her heart having to work harder. The X ray showed that her heart was slightly enlarged, thus working a bit harder. The fluid in her lungs were minimal. However, they have decided to put her on a diuretic since she will eventually have to go on one anyway before she has her heart surgery, which will hopefully still be when she is 2-3 months old. They are doing the reflux test on her tomorrow be putting a tube down her nose to monitor anything coming back up for 24 hours. We’ll know the results of that sometime Thursday (Dec. 8th.) They will also put a little thing by her nose to see if she has any sleep apnea.
So the short story is that she will most likely not be able to come home until Monday, for sure. I have been growing increasingly weary of Julia being in the hospital. I feel so torn between my two daughters. I know I am doing the best I can and that Julia is in great hands with some wonderfully loving nurses (I swear it is nurses that make the world go ‘round! They are so wonderful!) But I just want Juila HOME with her family. The doctors and nurses all agree that children generally thrive more when then can be home with their family with the same consistent caretakers and with those who can love them better than anyone. I feel like I haven’t been able to work consistently on breastfeeding since I’m at the hospital for only 1-2 feedings a day. So once she’s home, I can work on it a bit every feeding to give her lots of practice. Thankfully I have terrific milk supply. (Didn’t you all want to know that! Haha)
So that’s the scoop.
Prayer requests:
* For conclusive test results so we know what we’re dealing with and can deal with it!
* That Julia will “wake up” more from her very sleepy state (I’ve hardly seen her eyes since she’s been born!)
* For Julia’s feeding (this goes with her sleepy state.) That she would continue to grow in strength and coordination with nippling and then eventually transition into breast feeding.
*For Bob and me- as we are tired of having to visit Julia in the hospital and want her home!
*For Mattie as she is also growing weary of her mom being gone for 3-4 hours a day at the hospital.
Praises:
* My mom who is here has been such a trooper. She has been taking care of Mattie, doing laundry, cleaning, cooking and many other tasks that I am so appreciative of. She will be here until the 12th and then Bob’s parents arrive on the 13th and will be here until the 26th. My dad was also able to be here for a week but is home now. He had a great time with Mattie and got to hold Julia a couple of times in the hospital. It was great having him here, too!
* Julia’s weight is consistently increasing and she is tolerating all the food she is given- even if she has to take some of it through the NG tube.
* Julia has been slowing improving on her nippling (taking a bottle.)
Thank you for support and encouragement. I’m hoping to have more pictures up on the blog soon- but it’s been difficult staying on top of things like that. I have wonderful intentions of getting all sorts of stuff done after Mattie goes to bed, but instead I’ve been falling asleep in her bed almost every night during our nighttime snuggle routine. I’ve just been so tired. Oh well. I wanted to also mention that you can feel free to forward this email (or any of my updates) to anyone you feel would like to read them. Julia can use every prayer and so can we.
We love you all very much!
Love,
Val, Bob, Mattie and Julia
I just thought I’d update you some more on Julia’s progress. Today is her actual DUE DATE and she’s almost 3 weeks old (this Friday!) It’s been a bit disappointing because I figured that she would have been able to come home by now. But alas, she is still in the Intermediate Intensive Care Nursery. It seems as if her discharge is always “3 or 4 days away.”
A few things have come up, however, that keep her captive. Her feedings are improving, but still an issue. She actually “nippled” (or taken by bottle) 3 whole bottles worth (60-65 mL) in the last 4 or 5 days. On average, she nipples half her bottle at a time and then the rest of the bottle is gavaged (which means that she takes the rest down a tube that goes from her nose into her stomach.) Because Julia will most likely go home with a tube in her nose, Bob and I have had to learn how to insert the tube into her nose and slide it into her stomach. It is called an NG tube. It is not fun! Julia often cries, gags, and squirms during this process. It is torturous. The most frustrating thing about Julia’s eating is her inconsistency. She “can” do it. But she is often so sleepy and lethargic, that she poops out after a short while and won’t eat anymore after that. I think that over time, as she matures, she will “wake up” more and more and I think her eating will greatly improve.
The other issue that the doctors are trying to diagnose is that Julia is often very congested in her right nostril. They are not sure if it because Julia has a cold or if it is because she has reflux and milk is coming back up and getting into her nose making it congested (or both!) So when I went to the hospital yesterday, she was in isolation because they had done an X-ray of her lungs and did a swab test to test for infection. She should come out of isolation this morning if everything is clear. Because of Julia’s heart condition, they are concerned about her getting fluid in her lungs and her heart having to work harder. The X ray showed that her heart was slightly enlarged, thus working a bit harder. The fluid in her lungs were minimal. However, they have decided to put her on a diuretic since she will eventually have to go on one anyway before she has her heart surgery, which will hopefully still be when she is 2-3 months old. They are doing the reflux test on her tomorrow be putting a tube down her nose to monitor anything coming back up for 24 hours. We’ll know the results of that sometime Thursday (Dec. 8th.) They will also put a little thing by her nose to see if she has any sleep apnea.
So the short story is that she will most likely not be able to come home until Monday, for sure. I have been growing increasingly weary of Julia being in the hospital. I feel so torn between my two daughters. I know I am doing the best I can and that Julia is in great hands with some wonderfully loving nurses (I swear it is nurses that make the world go ‘round! They are so wonderful!) But I just want Juila HOME with her family. The doctors and nurses all agree that children generally thrive more when then can be home with their family with the same consistent caretakers and with those who can love them better than anyone. I feel like I haven’t been able to work consistently on breastfeeding since I’m at the hospital for only 1-2 feedings a day. So once she’s home, I can work on it a bit every feeding to give her lots of practice. Thankfully I have terrific milk supply. (Didn’t you all want to know that! Haha)
So that’s the scoop.
Prayer requests:
* For conclusive test results so we know what we’re dealing with and can deal with it!
* That Julia will “wake up” more from her very sleepy state (I’ve hardly seen her eyes since she’s been born!)
* For Julia’s feeding (this goes with her sleepy state.) That she would continue to grow in strength and coordination with nippling and then eventually transition into breast feeding.
*For Bob and me- as we are tired of having to visit Julia in the hospital and want her home!
*For Mattie as she is also growing weary of her mom being gone for 3-4 hours a day at the hospital.
Praises:
* My mom who is here has been such a trooper. She has been taking care of Mattie, doing laundry, cleaning, cooking and many other tasks that I am so appreciative of. She will be here until the 12th and then Bob’s parents arrive on the 13th and will be here until the 26th. My dad was also able to be here for a week but is home now. He had a great time with Mattie and got to hold Julia a couple of times in the hospital. It was great having him here, too!
* Julia’s weight is consistently increasing and she is tolerating all the food she is given- even if she has to take some of it through the NG tube.
* Julia has been slowing improving on her nippling (taking a bottle.)
Thank you for support and encouragement. I’m hoping to have more pictures up on the blog soon- but it’s been difficult staying on top of things like that. I have wonderful intentions of getting all sorts of stuff done after Mattie goes to bed, but instead I’ve been falling asleep in her bed almost every night during our nighttime snuggle routine. I’ve just been so tired. Oh well. I wanted to also mention that you can feel free to forward this email (or any of my updates) to anyone you feel would like to read them. Julia can use every prayer and so can we.
We love you all very much!
Love,
Val, Bob, Mattie and Julia
Friday, December 2, 2011
Thursday, December 1, 2011
Mattie is a great "Big Sis!"
Mattie is wearing her new "Big Sis" shirt she got from some dear friends. She likes visiting Julia and touching her if someone else is holding her. She is not quite comfortable holding her in the NICU or IICU. She says all the other babies make her nervous. I can imagine that all the equipment and wires do not make it the most comfortable experience for her. I'm sure once Julia is home it will be easier for her.
Julia email update 12/1
Hey Everyone,
I've been wanting to write an update on Julia... but it's been so busy! I feel like a barely get a spare minute and I hardly even open up my computer these days. But alas, I have a few minutes now and I'm going to take advantage!
Tomorrow Julia turns 2 weeks old. That is hard to believe! The days have been a blur! Julia is still in the Intermediate Intensive Care Nursery at Lucile Packard Children's Hospital. I was discharged 9 days ago, so I have been pumping breast milk around the clock and commuting to and from the hospital (30 minutes each way) to spend time with Julia and deliver the milk each day. It has been hard to balance being at the hospital with spending time with a cute 4 year old who misses her mommy very much when she is not around. Fortunately, both my parents have been here and have been such an amazing help and a good distraction for Mattie.
She is doing well, overall, but her main issue is eating. She is SO SLEEPY that she hardly wakes up for feedings and therefore must be fed through a tube in her nose. We've barely seen her eyes since she's been born. Feeding requires a lot of energy and concentration and she tends to only be able to take in 5-10 mL of milk by bottle before falling asleep and becoming quite comatose. However, the last 24 hours have seemed to go better. Last night, her nurse got her to eat 46 mL of milk out of the 60 mL they give her for each feeding- a record! This morning she took in 30 mL by the bottle and I saw her eyes open for longer than I have ever seen them. An occupational therapist comes in and works with her daily on her feeding. I have not really tried breast feeding much at all because it takes so much energy out of her. Whatever she doesn't take by bottle, they give to her through a tube in her nose that goes into her stomach. She will most likely come home with the tube in her nose and Bob and I will have to learn not only to feed her by tube, but we also need to learn how to put the tube from her nose down into her stomach. (This is a bit nerve wracking since there is a risk of getting the tube into her lungs on accident... ugh... no pressure!) It is called a "ng tube." I am hoping to eventually transition to breast feeding if possible after she masters eating by bottle a bit more and can stay awake longer.
So far, her heart is stable, which the doctor said was rather lucky since only 25% of kids remain stable like she is. So it is still looking promising that she will be able to delay surgery until she is 2-3 months old or so. Her lungs continue to be strong and clear with minimal respiratory concern.
She is gaining weight and is now 6 lbs 11 oz.
I have started a blog for Julia:
http://juliaalexandrabrown.blogspot.com/
It has pictures- mostly pictures at the moment. I have not had much time to fill in much text. But if you want to see some more pictures, I will try to keep recent pictures on there.
Prayer Requests:
* Julia to "wake up" and become more alert
* Julia to be able to bottle feed larger quantities of milk
* Julia's coordination of the suck-swallow-breathe that is necessary for feeding
* Val and Bob's energy as they balance life and trying to spend time with Julia at the hospital
* Mattie's adjustment to our "new" life with Julia
* For Bob and Val to get comfortable with the NG tube
Praise:
* Julia's heart continues to be stable
* She has gained weight
* She seemed to be improving on feeding
Thanks for your prayers and for your continued support. Julia may be coming home in the next few days (maybe early next week.) We'll keep you posted!
We love you all!
Val, Bob, Mattie, and Julia Brown
I've been wanting to write an update on Julia... but it's been so busy! I feel like a barely get a spare minute and I hardly even open up my computer these days. But alas, I have a few minutes now and I'm going to take advantage!
Tomorrow Julia turns 2 weeks old. That is hard to believe! The days have been a blur! Julia is still in the Intermediate Intensive Care Nursery at Lucile Packard Children's Hospital. I was discharged 9 days ago, so I have been pumping breast milk around the clock and commuting to and from the hospital (30 minutes each way) to spend time with Julia and deliver the milk each day. It has been hard to balance being at the hospital with spending time with a cute 4 year old who misses her mommy very much when she is not around. Fortunately, both my parents have been here and have been such an amazing help and a good distraction for Mattie.
She is doing well, overall, but her main issue is eating. She is SO SLEEPY that she hardly wakes up for feedings and therefore must be fed through a tube in her nose. We've barely seen her eyes since she's been born. Feeding requires a lot of energy and concentration and she tends to only be able to take in 5-10 mL of milk by bottle before falling asleep and becoming quite comatose. However, the last 24 hours have seemed to go better. Last night, her nurse got her to eat 46 mL of milk out of the 60 mL they give her for each feeding- a record! This morning she took in 30 mL by the bottle and I saw her eyes open for longer than I have ever seen them. An occupational therapist comes in and works with her daily on her feeding. I have not really tried breast feeding much at all because it takes so much energy out of her. Whatever she doesn't take by bottle, they give to her through a tube in her nose that goes into her stomach. She will most likely come home with the tube in her nose and Bob and I will have to learn not only to feed her by tube, but we also need to learn how to put the tube from her nose down into her stomach. (This is a bit nerve wracking since there is a risk of getting the tube into her lungs on accident... ugh... no pressure!) It is called a "ng tube." I am hoping to eventually transition to breast feeding if possible after she masters eating by bottle a bit more and can stay awake longer.
So far, her heart is stable, which the doctor said was rather lucky since only 25% of kids remain stable like she is. So it is still looking promising that she will be able to delay surgery until she is 2-3 months old or so. Her lungs continue to be strong and clear with minimal respiratory concern.
She is gaining weight and is now 6 lbs 11 oz.
I have started a blog for Julia:
http://juliaalexandrabrown.blogspot.com/
It has pictures- mostly pictures at the moment. I have not had much time to fill in much text. But if you want to see some more pictures, I will try to keep recent pictures on there.
Prayer Requests:
* Julia to "wake up" and become more alert
* Julia to be able to bottle feed larger quantities of milk
* Julia's coordination of the suck-swallow-breathe that is necessary for feeding
* Val and Bob's energy as they balance life and trying to spend time with Julia at the hospital
* Mattie's adjustment to our "new" life with Julia
* For Bob and Val to get comfortable with the NG tube
Praise:
* Julia's heart continues to be stable
* She has gained weight
* She seemed to be improving on feeding
Thanks for your prayers and for your continued support. Julia may be coming home in the next few days (maybe early next week.) We'll keep you posted!
We love you all!
Val, Bob, Mattie, and Julia Brown
Sunday, November 27, 2011
Saturday, November 26, 2011
Julia in the Intermediate Intensive Care Nuersery- one week old
Julia is now a week and a day old. The neonatologist said it could be another week before she is discharged due to her not eating on her own very well. She just sleeps all the time or she gets tired easily. She is still working on her coordination as well. She gets pretty tired out from trying to breast or bottle feed.
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