We took Rachel to see the pediatrician yesterday for the third time already in her young life. Our hope was to see at least some weight gain. That did not happen. In fact, Rachel actually lost another several ounces this past week. Not so good.
What that means is that Rachel needs some sort of therapy to teach her how to eat better since she's apparently not getting the nutrition she needs. And here's why: because Rachel doesn't have a soft palate, she cannot suck as well as most babies can. And since she cannot suck well, she expends more energy trying to eat than she takes in via nursing. She fights hard to nurse, but eventually gives up because it's just too hard. With an inadequate amount of calories, Rachel is not gaining weight, but in fact losing it.
We were referred by the pediatrician to a place for occupational therapy. That place apparently is booked up for quite awhile. And since Rachel's weight gain is not something we can really wait around for, we are in need of getting her feeding help immediately. Initially, we were a little discouraged and wondered what we were going to do. That's when some neat things started happening yesterday.
Since this therapy place was booked, we were referred to another company, and Becca began making calls. It turns out that Becca has several old friends who work for this company. They really want to help us out, which is so neat. In fact, we're hoping to see one of them tonight, who will begin to teach us some things we can do with Rachel to help her along!
We also received some wonderful help from one of Becca's closest friends from college, who is an established therapist. She was gracious enough to meet with Becca and Rachel last night. She's given us a great start in working with Rachel and given us some good recommendations for tools and techniques as well. She's working hard for us to get us hooked up with the people who will know exactly what Rachel needs. Very cool. We're so grateful for her.
And then, we heard from the company Becca works for (a therapy company!). They also want to help out in any way they can to see Rachel and give us what we need to be trained to get her eating!
We're grateful to the Lord for providing for our daughter in this way right now. It was a really neat day yesterday seeing how He was using past connections, as well Becca's current field of work to give Rachel what she needs during this time.
We're excited to learn more about how to feed Rachel and hopeful that she'll quickly learn what she needs to learn and be strengthened enough to eat well and gain weight. We return to the pediatrician in two weeks to check her progress. If I don't post anything between now and then, you can certainly expect a post after that visit.
Thank you, friends, for your prayers and support. We love this girl!
Tuesday, November 20, 2012
Tuesday, November 13, 2012
2nd Pediatrcian Visit
Not much to share here (which is a good thing!). But yesterday Rachel went back to see the pediatrician and she weighed in at the same weight as last Monday. So that's really good. She'll be going back next Monday for her 2 week checkup, so it would be awesome if she has gained a little by then. Pray for that!
Friday, November 9, 2012
First ENT visit
Yesterday we took Rachel to Dr. Biavati, the Ear-Nose-Throat doctor/surgeon we had been referred to. It was a really encouraging visit. He took a look at Rachel and pretty much confirmed most of what we had heard so far, with a couple of additions.
He said that Rachel's soft palate isn't even really a quarter developed; it's basically non-existent. This will require surgery for her around 11 months of age. This is kind of the magic age for this surgery because it will allow Rachel's mouth to develop as much as possible before she starts trying to form words, which would be difficult without the soft palate and properly formed uvula. Ideally, we would wait til Rachel was 4 or 5 years old for development's sake, but in order for her start out speaking normally, 11 months is the latest we can wait. So probably next October will be surgery time for little Rachel. It will be an inpatient procedure with a one-night stay, likely at Medical City. And some type of therapy will also follow in the days afterwards. I don't know what that will look like just yet.
Additionally, Dr. Biavati informed us that infants without their soft palate are at a slightly higher risk of developing hearing loss because fluid tends to sit near their ears and drain properly. It is possible that Rachel will need to get tubes in her ears to prevent that. We'll return to Dr. Biavati in 3-4 months, and that time he'll let us know if she's got that fluid hanging out or not. If so, we'll proceed with the tubes. If not, no tubes!
Rachel has been eating very well, and we really want to see some weight gain by her next pediatrician visit on Monday. We're pretty certain that we don't need to see on Occupational Therapist for feeding, but a little wait gain would confirm that even more. She's doing great on her diapers, so we're confident that she's getting the nutrition she needs.
I'll post again early next week with an update about that pediatrician visit. Thank you for your prayers!
He said that Rachel's soft palate isn't even really a quarter developed; it's basically non-existent. This will require surgery for her around 11 months of age. This is kind of the magic age for this surgery because it will allow Rachel's mouth to develop as much as possible before she starts trying to form words, which would be difficult without the soft palate and properly formed uvula. Ideally, we would wait til Rachel was 4 or 5 years old for development's sake, but in order for her start out speaking normally, 11 months is the latest we can wait. So probably next October will be surgery time for little Rachel. It will be an inpatient procedure with a one-night stay, likely at Medical City. And some type of therapy will also follow in the days afterwards. I don't know what that will look like just yet.
Additionally, Dr. Biavati informed us that infants without their soft palate are at a slightly higher risk of developing hearing loss because fluid tends to sit near their ears and drain properly. It is possible that Rachel will need to get tubes in her ears to prevent that. We'll return to Dr. Biavati in 3-4 months, and that time he'll let us know if she's got that fluid hanging out or not. If so, we'll proceed with the tubes. If not, no tubes!
Rachel has been eating very well, and we really want to see some weight gain by her next pediatrician visit on Monday. We're pretty certain that we don't need to see on Occupational Therapist for feeding, but a little wait gain would confirm that even more. She's doing great on her diapers, so we're confident that she's getting the nutrition she needs.
I'll post again early next week with an update about that pediatrician visit. Thank you for your prayers!
Tuesday, November 6, 2012
Pediatrician Visit #1
Yesterday we took Rachel back up to Baylor to see the pediatrician again. The doctor told us that everything looks fine with Rachel in terms of her feeding, so that is great news. She said we can monitor her diapers and her weight for the next week, and if she continues to get the nutrition she needs and doesn't have any choking issues, then we won't have to see an occupational therapist. That would be great!
The pediatrician set us up with a ENT/surgeon who we'll have a consultation with on Thursday. We're looking forward to the meeting and finding out a little more about what surgery (and recovery) will be like. Check back Friday for an update.
Thanks for praying for Rachel. She's amazing. Such a sweet baby.
The pediatrician set us up with a ENT/surgeon who we'll have a consultation with on Thursday. We're looking forward to the meeting and finding out a little more about what surgery (and recovery) will be like. Check back Friday for an update.
Thanks for praying for Rachel. She's amazing. Such a sweet baby.
Sunday, November 4, 2012
Home!
Rachel's getting settled in to her new home. So far I'm pretty sure she's happy to be here! Tomorrow we go back to Baylor to meet with the pediatrician about what we need to do for Rachel's palate. She'll help get us where we need to go.
And although traditionally this would be my last post on our birthing liveblog, I will continue to give infrequent updates about Rachel's status and what all we'll be doing in the coming months so that if you're interested, you can just check back here from time to time for the latest. Thanks for journeying with us these last couple days!
And although traditionally this would be my last post on our birthing liveblog, I will continue to give infrequent updates about Rachel's status and what all we'll be doing in the coming months so that if you're interested, you can just check back here from time to time for the latest. Thanks for journeying with us these last couple days!
Heading Home Soon
Rachel and Rebecca are both clear to leave the hospital, so we're getting things together to head home shortly. Won't make it to the service at CBC this morning (it starts in 5 minutes!), but we're excited to hear about it later!
A Great Night
Rachel slept like a champ last night. I'm sure she's just getting all her sleep in before we take her home! ;-) She's being examined by the pediatrician again this morning, and we're hoping to be discharged in a few hours.
Thanks to everyone for your comments on last night's post and on Facebook. We're grateful for your prayers. It's neat to think about how God designed Rachel exactly how He wanted to. And that He'll use this first year of her life with doctors visits, surgery, etc. to do things in her, us, and those around us that we don't even know about yet. It's really something to get excited about.
On a not-so-subtle change of subject, I watched ALOT of college football here in Truett 702 yesterday! How great is it have a baby on a Friday afternoon in November!? That means a full Saturday of pigskin! Here's Rachel watching the Alabama/LSU game with me last night!
Thanks to everyone for your comments on last night's post and on Facebook. We're grateful for your prayers. It's neat to think about how God designed Rachel exactly how He wanted to. And that He'll use this first year of her life with doctors visits, surgery, etc. to do things in her, us, and those around us that we don't even know about yet. It's really something to get excited about.
On a not-so-subtle change of subject, I watched ALOT of college football here in Truett 702 yesterday! How great is it have a baby on a Friday afternoon in November!? That means a full Saturday of pigskin! Here's Rachel watching the Alabama/LSU game with me last night!
Saturday, November 3, 2012
Something Unique About Rachel
Just a couple hours after Rachel was born, we found out that she had no uvula - or at least that's what we thought at the time. In case you're wondering what a uvula is, it's that little ball that hangs down over your throat at the back of your mouth! Anyways, the nurse practitioner told us that Rachel didn't have one. And when we peeked inside her mouth, sure enough! No little dangling ball in there! This seemed to explain why she was making some funny noises when nursing, which indicated that she maybe wasn't eating well enough. Well, we were slightly worried. Since having no uvula is quite rare, there isn't all that much info about it to give help to parents wondering what kind of future issues their kid might have with a condition like this. And as of yesterday evening, no one around here really had any good answers either. Most everyone on our floor shrugged and said, "what's a uvula?!" We wouldn't know anything real definitive until late this morning when we had a chance to talk with the pediatrician here. Her assessment was helpful.
It turns out that Rachel does indeed have a uvula, it just doesn't look like most people's. In fact, her uvula is separated and basically attached to the sides of her mouth, almost like an extension of her soft palate. And it is her palate that is much of the issue. Her hard palate is fine (that firm part of the roof of your mouth you feel when you stick your tongue to it). But her soft palate (the soft part of the roof of your mouth you feel when you reach your tongue back as far as you can) is only 1/4 complete. The rest of it is split, or cleft. And her uvula is split, having not developed correctly. That's a bit of a problem for eating and would also be an issue for speaking down the road.
The bottom line, Rachel will need surgery, likely within the first year of her life. She's going to need to have her palate repaired, as well as her uvula restructured. The great news is that once she does have the surgery, she should be completely healthy and function normally. We can't have the surgery now, however, because her mouth is still growing and developing and to rush the surgery could complicate things in the future. In the meantime, her eating is a little more difficult than it is for most babies. She won't be able to get the really great suction that most infants do, so please pray for Rachel and for Becca as they work together as a team to feed and eat. Additionally, because some portions of her palate are incomplete, her nasal cavity is extra-exposed, which means that spit up will tend to come through her nose sometimes. She's also more prone to prolonged gagging than most babies might be. This is obviously uncomfortable and will mean some extra love and attention from us as we nurse and feed her. Pray for us as we learn Rachel's signals and try to get her what she needs and protect her from choking.
Yes, we were at times a bit nervous about what this condition might bring. And we still are to some extent. Parents don't usually desire that their infants have to have surgery. But we're grateful for the news that this is a relatively small issue, and we are praying that, Lord-willing, what we know now won't end up being anything more severe later.
Please join us in praying for Rachel as she develops. And please pray for our family as we make multiple doctors' visits and learn new things in the coming weeks and months leading up to her surgery.
I'll leave you tonight with my favorite moment of the last couple days. Here is my dad - teary-eyed - holding his granddaughter, Rachel Pugh, just an hour after her birth. I still remember walking into our house 23 years ago as a young boy and seeing my parents weeping, as my dad held his daughter, Rachel Pugh, in his arms just moments after she had passed away. What a gift my sister Rachel was. And what gift my daughter Rachel is. How precious is the God we serve.
It turns out that Rachel does indeed have a uvula, it just doesn't look like most people's. In fact, her uvula is separated and basically attached to the sides of her mouth, almost like an extension of her soft palate. And it is her palate that is much of the issue. Her hard palate is fine (that firm part of the roof of your mouth you feel when you stick your tongue to it). But her soft palate (the soft part of the roof of your mouth you feel when you reach your tongue back as far as you can) is only 1/4 complete. The rest of it is split, or cleft. And her uvula is split, having not developed correctly. That's a bit of a problem for eating and would also be an issue for speaking down the road.
The bottom line, Rachel will need surgery, likely within the first year of her life. She's going to need to have her palate repaired, as well as her uvula restructured. The great news is that once she does have the surgery, she should be completely healthy and function normally. We can't have the surgery now, however, because her mouth is still growing and developing and to rush the surgery could complicate things in the future. In the meantime, her eating is a little more difficult than it is for most babies. She won't be able to get the really great suction that most infants do, so please pray for Rachel and for Becca as they work together as a team to feed and eat. Additionally, because some portions of her palate are incomplete, her nasal cavity is extra-exposed, which means that spit up will tend to come through her nose sometimes. She's also more prone to prolonged gagging than most babies might be. This is obviously uncomfortable and will mean some extra love and attention from us as we nurse and feed her. Pray for us as we learn Rachel's signals and try to get her what she needs and protect her from choking.
Yes, we were at times a bit nervous about what this condition might bring. And we still are to some extent. Parents don't usually desire that their infants have to have surgery. But we're grateful for the news that this is a relatively small issue, and we are praying that, Lord-willing, what we know now won't end up being anything more severe later.
Please join us in praying for Rachel as she develops. And please pray for our family as we make multiple doctors' visits and learn new things in the coming weeks and months leading up to her surgery.
I'll leave you tonight with my favorite moment of the last couple days. Here is my dad - teary-eyed - holding his granddaughter, Rachel Pugh, just an hour after her birth. I still remember walking into our house 23 years ago as a young boy and seeing my parents weeping, as my dad held his daughter, Rachel Pugh, in his arms just moments after she had passed away. What a gift my sister Rachel was. And what gift my daughter Rachel is. How precious is the God we serve.
The Boys Are Back
Lots of Fun
Good Morning!
Friday, November 2, 2012
Some Fun Pics to Close Out the Evening
Meet Your Brothers!
Settling In
We're up in Truett 702 having a ball. We've gotten to hang out with lots of special friends! Things are quieting down, and Becca is about to take a much-deserved nap. She's a mommy of three! How cool is that?!?
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