[gaelicgoddess]

My name is Donna. I'm from Nashville. My husband and I had our third child, Alana, on March 21st. She was born at 37 weeks.

It was immediately discovered after her birth that she had a cleft palate/high palate. We had looked for this on ultrasound since my husband was born with a sub mucus cleft, but the ultrasound tech said it looked normal. So we were a little surprised at this. But other then the palate, there were no immediate concerns. It wasn't until about 4 hours after her birth that she was admitted to the NICU for a breathing episode/dusky spell. After being evaluated, it appeared that her breathing episodes were due to occluding her airway with her tongue because it was so far back. A further evaluation by an ENT gave her the diagnosis of Pierre Robin Sequence (small jaw/recessed tongue/high palate). After learning that my husband had a sub mucus cleft and retina problems/nearsightedness, and that eye problems run in his family, it was suggested that the Pierre Robin Sequence was probably associated with Stickler's Syndrome. Genetics testing was done and it has come back positive for Stickler's.

Luckily, giving Alana a little time to grow physically and developmentally allowed her to move past the breathing episodes. She did have a Nasal Cannula and Nasal Trmupet to help her manage her airway, but was able to wean off of them after a couple of weeks and is doing fine. The team of docs were at one point discussing a trach or a mandibular distraction surgery if her breathing episodes continued, but our wonderful ENT pushed for extra time for her to grow before trying anything invasive. She is on an Apnea Monitor at home now (only at night), but will be allowed to discontinue that after a month with no spells.

Feeding issues are our next big hurdle. She was fed by OG tube since day 2 of life, but now has a g-button since they would not discharge us with an OG or NG tube. I was planning on exclusively breastfeeding like I had done for my previous babies, but I'm not sure this is an option? I'm exclusively pumping for now, but Alana is supplemented with formula since I don't pump enough yet (reading up on how to establish and increase supply when baby is not nursing). I have only had a few times of trying to latch her on without any success. I'm under the impression that she is able to suck pretty well because her palate is not that bad (she actively sucks on a pacifier but I have to help hold it in her mouth). I'm not sure though, if she is able to produce enough suction to draw a nipple into her mouth. And she isn't able to express milk effectively with her tongue because of her tongue being so far back. This seems to be the problem for breastfeeding and bottlefeeding. She was only able to get 3ml from a haberman bottle 2 weeks ago, but is now able to get 15ml. As her jaw grows, tongue comes forward, and she practices suck/swallow, this should improve? Will she ever be able to breastfeed? Or is a haberman our only option? The goal for her ENT and Speech Pathalogist is to have her keep practicing with a haberman.....when she is able to completely feed by mouth the g-button can come out. This could happen with jaw/tongue growth/development over the next few months, but at the very least the g-buttom will come out after her palate is repaired at 10 months. They said I could keep practicing latching onto breast, but that it is mostly for comfort nursing. I really wish that in time she could breastfeed. For now she is fed by haberman for 15 min. and then gets whatever is left in the bottle through her g-button.

I'd appreciate any information anyone has.

Thanks!

 

[MotherWhimsey]

Hey! We're in Oak Ridge, so not too far away. We go to vandy for our son's care, is that where you guys have been going? Our ENT there was Dr W., who I really like. I don't know much about PRS, but I just wanted to say hi to you since you're not far away!

 

[AndVeeGeeMakes3]

Hi Donna!

I'm a PRS mama, too. In fact, I can't really post right now because we're headed out the door going to Nashville for surgery. (If you're around Vandy any time in the next week, I'd love to meet you and let you meet VeeGee.)

More later . . . . . .

 

[2boyzmama]

Successfully exclusive breastfeeding mama of a PRS baby who also has 22q deletion here!!! I am already really late for work, but I think I can sneak back on here around lunch time to write more to you. You have a lot of challenges ahead, but nothing you can't find ways around!!!

Congratulations on the birth of your daughter!

I'll be back in a few hours...

 

[2boyzmama]

Okay, I'm back

This might be choppy, or spread over several posts since I'm multi tasking at work right now

First of all, ironically, Alana was going to be my son Connor's name if he was a girl, my son Connor has PRS, and I see you also have a Conor! I like your tastes in baby names

Wonder what else we have in common?!

Connor's birth defects caught us completely by surprise...there were no obvious signs on ultrasound, although looking back, there was some retrognathia that was obvious, however I also have micro/retrognathia with a high arched palate, as does my mom (her's was pretty severe and required reconstructive surgery as an adult to "build" her a chin, she never received orthodontics as a child. I did receive orthodontics, including a palate expander, and now have only a slight overbite and cross bite). No one ever told us there was a name for it...Pierre Robin. Also interestingly, retrognathia was noted on my first son's ultrasound, I remember seeing it and laughing saying "poor kid has his mommy's jaw!" yet it wasn't that noticeable at birth, didn't cause him ANY issues, he doesn't have palate involvement of any kind, and he's perfectly normal in all other ways.

So when Connor was born with the lower jaw and palate issues, it didn't surprise me. However, he looked "off" to me, and immediately had pretty severe breathing issues. Feeding him was a nightmare...he coudln't latch, didn't root, choked, gagged, etc. Also, his ears were malformed, it looked like someone had put their finger behind his ear and pushed it forward until the outside edge of his ear touched his ear lobe. We didn't even know if his ear was fully formed (looked almost exactly like this) We also learned that his ear canals weren't open (called atresia).

Some of the drs thought he was normal, just needed some help learning how to feed. But I remember one pediatrician in particular who kept coming to check on him, seemed concerned, made sure I knew where the local children's hospital was before we were discharged. He must have had a gut feeling.

Turns out that gut feeling was right...but it took us 11 months to sort through it all and get a diagnosis! Those 11 months were full of tons of appts, tests, scares, surgeries... He was Failure to Thrive, his breathing was so loud I had people approach me in public asking if he was okay, I would lay awake at night just holding him and crying, wondering what was wrong with my baby and if I was somehow causing the problems or not doing enough. I was so determined to breastfeed him, even after we learned he was aspirating when he swallowed, so I doctor hunted until I found one that would help me. I think I talked to nearly every lactation consultant within about 2 hours of us!!

Here's what we finally discovered worked to keep him at the breast: I fed him in a fully upright position with his neck extended somewhat in order to minimize the aspiration and allow gravity to help him swallow. I would have him sit facing me, tummy to tummy, straddling one of my legs and nurse him that way. It was a little awkward at first, but we got the hang of it. Because of his palate being so arched, I would express some milk with my pump before feeding him in order to draw my nipples out as much as possible (you have to try to make yourself look like the Haberman!). Also, by pumping first, baby gets more hindmilk, which is higher fat and helps with weight gain.

What kind of cleft does she have? Is it large? Has anyone talked about a prosthesis of any sort to help her form a seal? Connor did not have an open cleft, so our situation was different in that respect. Here are some links that might suggest something you haven't tried: Link 1 Link 2 Link 3

I'm sorry they pushed you to a g-tube, I don't understand why they wouldn't let you go home with an ng-tube??? Was she taking the Haberman at the hospital? My experiences with drs has not been always pleasant throughout all this, and often they are looking for the fastest way to get you out of the hospital

: instead of helping you learn how to care for your child. LOTS of cleft babies go home with no feeding tube!! In fact most. Anyway, have you tried more frequent feedings with the Haberman? With Connor I sometimes did only 5 minutes at the breast, but put him on every 30 minutes for several hours at a time, then let him sleep for a while, then started the process over again. It was exhausting, and made it really hard to take care of my other son, but with his breathing issues (he had laryngotracheobroncho malacia) he tired really easily at the breast, so this was the only way to get him to take in enough volume. He didn't tire quite as easily with the bottle, so at the end of a cycle of feeding him like that, I'd "top him off" with a bottle of expressed milk.

As I think of more, I'll post again. There are some mother moms on here with babies who had open clefts and might give you more or different info. I don't know that there are any Stickler's babies on here, but you might try a search of the forum to see.

 

[momtoalexsarah]

My youngest daughter (also my 3rd child - born march 20 of 2006) was born with PRS and a submucus cleft of the hard palate and a small cleft of the soft plate (with bifed uvula) We had nosy breathing, apenea, and feeding issues from the start. Our hospital didn't recognise the symptoms of PRS so we treated her according to what was working. She spent a week in NICU for breathing, apnea, feeding and jaundice. Came home on an apnea monitor and bili blanket being fed BM from a Haberman (although we soon switched to the playtex nurser bottles with the drop in linners and a stage 2 nipple- at the start we enlaged that. We found it worked better then the haberman - easer for us to control the flow. She was on that for 3 months then I finally got her nursing, although it was only because I had an overactive letdown and tonnes of mik - her suck was still weak.
We had a hard first year, ear infections, FTT, RSVx2 and other issues. At one year we saw a pead (we are in canada and generaly only see a GP) He diagnosed the cleft and the PRS plus a heart defect, hypotonia and other delays. We did a worl wind of testing and where refered to a cleft clinic. They at the time decided to wait and see, last August they decided that between the reflux, sinsus issues and the speech delay that they where going to have to fix it. In January they did a velopharyngeal sphincteroplasty and some other things in there. She is getting beter all the time. If you need more infor I can give you more later, just trying to get 3 kids some supper.

 

[gaelicgoddess]

Quote:

Originally Posted by MotherWhimsey B]We go to vandy for our son's care, is that where you guys have been going?[/B]

Quote:

Originally Posted by AndVeeGeeMakes3 Hi Donna! I'm a PRS mama, too. In fact, I can't really post right now because we're headed out the door going to Nashville for surgery. (If you're around Vandy any time in the next week, I'd love to meet you and let you meet VeeGee.)

Hi Aniyah and Wendy. We did end up at Vanderbilt after a week at Baptist. We were transferred to Vanderbilt by our ENT (not sure I can mention his name?) Alana was at Vanderbilt until she was discharged Monday. We will be back and forth from appointments, but we don't have anything for a couple of weeks.

2boyzmama, we certainly have a lot in common. I like your taste in names also,

We knew that a cleft palate/eye problems could be a possibility since dh had that when he was born. He had never been labeled as having PRS though and was never tested for Stickler's, so we didn't know if it was definitely hereditary. And we didn't know anything about the PRS with Stickler's. Alana was checked 4 times for cleft palate by ultrasound and they said it looked normal. Not to mention the weekly ultrasounds I ended up having from 32 weeks on because of polyhydraminios. Now that we now about the PRS, I can definitely see the micronathia on the ultrasound pic. And now I know why I had polyhdramnios (lots of amniotic fluid). Found out that lots of amniotic fluid happens in PRS pregnancies since baby can't swallow enough amniotic fluid with a small jaw.

Alana is diagnosed as having a higher arching posterior cleft. The doctors kept saying how it wasn't as bad as they have seen whatever that means? She is not able to hold a pacifier in her mouth, but works hard at sucking on it and a Haberman as long as we hold it in her mouth. She will not latch on to breast and hasn't since birth. She tries but gives up. I think it's because she can't draw the nipple into her mouth so she just gives up because nothing happens. I'm really not sure though. I've worked briefly with the IBCLC lactation consultants at the hospital who have pretty much told me that any baby with a cleft palate can't breastfeed and that I should take comfort in knowing I'm pumping for her. I just want to make sure I'm not giving up to early here.

The doctors would not discharge us with an OG or NG tube because of risk of aspiration if it came out and we put it in wrong. I think it was a liability thing honestly. But I do like the fact that she can try to learn to eat orally without another tube in her mouth in the way. And it sounds like the g-tube is easily removed and will heal quickly.

If she absolutely can not physically breastfeed, then I guess my next question is how am I going to teach her to eat by bottle completely and get this g-tube out. Is the haberman the only option? On the PRS network I thought I saw a couple of people mention that they tried the Pigeon Nipple, Dr. Brown's bottles with y cut nipple, Mead Johnson Bottle, and putting a long slit in a Playtex Nurser.

 

[gaelicgoddess]

Quote:

Originally Posted by momtoalexsarah Came home on an apnea monitor and bili blanket being fed BM from a Haberman (although we soon switched to the playtex nurser bottles with the drop in linners and a stage 2 nipple- at the start we enlaged that. We found it worked better then the haberman - easer for us to control the flow. She was on that for 3 months then I finally got her nursing, although it was only because I had an overactive letdown and tonnes of mik - her suck was still weak.

I had seen that mentioned on the PRS network and was wondering how that worked. Unfortunately I'm struggling with milk supply and have never had a big let down, so I don't have that working for me. I would definitely love to hear nay other advice whenever you have time.

 

[momtoalexsarah]

I was able to build a big supply through pumping and haveing oversuppy in the past.
I would recomend trying the platex bottles with the drop in liners and get different styles of nipples to try.
Are you having much trouble with nasal reguritation when you are giving oral feeds?

 

[gaelicgoddess]

I do have two playtex nursers that I could try. She does occasionaly regurgitate a little out of her nose, but not every time she eats. Mostly she has a lot of bubbles dribbling out of her mouth when she is trying the haberman. I'm assuming because she doesn't have a good seal?

 

[Alice27]

Quote:

Originally Posted by gaelicgoddess I've worked briefly with the IBCLC lactation consultants at the hospital who have pretty much told me that any baby with a cleft palate can't breastfeed and that I should take comfort in knowing I'm pumping for her

This attitude reallly annoys me - IBCLC lactation consultants should be better informed than that. You could get yourself a copy of LLL's 'The Breastfeeding Answer Book' - there is a fair bit of information there about breastfeeding and cleft lip/palate and Pierre Robin syndrome. There is a position called the Dancer hold - basically you cup your breast with fingers under and thumb above, then slide them forward so that your fingers cup under your child's chin and thumb holding cheek, in a way that you can keep your baby close to the breast.

Other things that may help are an SNS or Lact-Aid system - they probably need to be modified somewhat if your child lacks adequate suction - and maybe a nipple shield (until your baby is strong enough to draw out the nipple).

I think that many people think that babies with cleft palates can't nurse is because they only consider exclusive breastfeeding. Most babies don't have their palate repair until 6 months or later, when a lot of people expect them to be weaned, or well on their way to it. My daughter was born with a cleft lip and palate - quite wide. She began nursing fully at 7 months, but at 2 years and nine months she has been nursing at the breast much longer than she was fed by bottle.

'Comfort nursing' is really very important. It doesn't matter if your baby is getting all, or the majority of her nourishment via a bottle, or tube - nursing, even occasional nursing, has all kinds of health benefits;

it is an excellent facial exercise improving both aesthetical development of face as well as optimal palate development and muscle building which will help later speech

helps prevent ear infections

promotes bonding - is an enjoyable time for both mother and child

satisfies the child's need for comfort sucking

There is really not much information out there about breastfeeding these babies. We can all do our bit by writing our stories and seeking to have them published. What you have writte 2boyzmamma, is really interesting.

My daughter didn't get a lot of practice at breastfeeding prior to her palate repair at 6 1/2 months. Pumping is a full time job and I have an older child too. But even one session at the breast per day, was enough at the beginning (sometimes with a supplementary feeder) and gradually she got so good at it that I considered trying to breastfeed her without supplementing (it was difficult to find time to do both and I didn't have much luck with the supplementer). By the time of her operation she was nursing through the night without bottles, and without pumping - heaven!

Getting her back to the breast after her operation was not automatic - she went on a 2 week nursing strike - but once she did, we haven't looked back. Even if she hadn't nursed, the times we spent together 'comfort nursing' were very special.

PM me if you would like more information, or you can read some of my older messages from this and the 'breastfeeding challenges' forum.

Good luck,

Alice

 

[gaelicgoddess]

Quote:

Originally Posted by Alice27 This attitude reallly annoys me - IBCLC lactation consultants should be better informed than that. You could get yourself a copy of LLL's 'The Breastfeeding Answer Book' - there is a fair bit of information there about breastfeeding and cleft lip/palate and Pierre Robin syndrome. There is a position called the Dancer hold - basically you cup your breast with fingers under and thumb above, then slide them forward so that your fingers cup under your child's chin and thumb holding cheek, in a way that you can keep your baby close to the breast.

Yeah, I was kind of annoyed also which is why I'm trying to ask around and research as much as I can before giving up. This is basically the position that all the IBCLCs I have talked with are taking:
http://www.llli.org/llleaderweb/LV/LVOctNov01p111.html
I'll have to see what The Breastfeeding Answer Book has to say. I had seen the dancer hold mentioned and tried it (alnog with a few other tips), but nothing seems to be working. She can not get a seal on the breast because of her lower jaw and can no get a good suction to draw the nipple back. I think if it was just one or the other (just cleft or just jaw) we could work things out. But she has three things working against her (jaw/tongue/palate). Sorry, I probably sound negative today. But I've been trying to get her to latch on all week with no success.

Quote:

Other things that may help are an SNS or Lact-Aid system - they probably need to be modified somewhat if your child lacks adequate suction - and maybe a nipple shield (until your baby is strong enough to draw out the nipple).

I've tried the nipple shield but again she just can't hold on to it. I kept suggesting the SNS at the nicu, but if she can't latch on at all I guess we can't use it.

Quote:

I think that many people think that babies with cleft palates can't nurse is because they only consider exclusive breastfeeding. Most babies don't have their palate repair until 6 months or later, when a lot of people expect them to be weaned, or well on their way to it. My daughter was born with a cleft lip and palate - quite wide. She began nursing fully at 7 months, but at 2 years and nine months she has been nursing at the breast much longer than she was fed by bottle. 'Comfort nursing' is really very important. It doesn't matter if your baby is getting all, or the majority of her nourishment via a bottle, or tube - nursing, even occasional nursing, has all kinds of health benefits; it is an excellent facial exercise improving both aesthetical development of face as well as optimal palate development and muscle building which will help later speech helps prevent ear infections promotes bonding - is an enjoyable time for both mother and child satisfies the child's need for comfort sucking

Agree 100% with everything you've said. This is why I'm so determined to find a way for it to work.

Quote:

There is really not much information out there about breastfeeding these babies. We can all do our bit by writing our stories and seeking to have them published. What you have writte 2boyzmamma, is really interesting. My daughter didn't get a lot of practice at breastfeeding prior to her palate repair at 6 1/2 months. Pumping is a full time job and I have an older child too. But even one session at the breast per day, was enough at the beginning (sometimes with a supplementary feeder) and gradually she got so good at it that I considered trying to breastfeed her without supplementing (it was difficult to find time to do both and I didn't have much luck with the supplementer). By the time of her operation she was nursing through the night without bottles, and without pumping - heaven! Getting her back to the breast after her operation was not automatic - she went on a 2 week nursing strike - but once she did, we haven't looked back. Even if she hadn't nursed, the times we spent together 'comfort nursing' were very special. PM me if you would like more information, or you can read some of my older messages from this and the 'breastfeeding challenges' forum. Good luck, Alice

Thank you so much Alice. Going to take a look in the challenges forum. By the way, my dds palate repair will probably be around 10 months. I wonder why some do it at 6 months and other do it around 10 months. I'll have to ask my ENT that. And I'm also going to ask him about a palatal obturator (which covers the cleft temporarily until surgery). Not sure if that's an option for us.

 

[2boyzmama]

I'm glad Alice wrote in, her experience probably is closer to what you're going through than what I did.

I was blessed with a HUGE supply, which is what allowed Connor to stay at the breast despite his horrid latch and him basically not being able to suck. I would have multiple let downs and the milk just flowed into his mouth whether he sucked or not. I really think that's the only thing that kept him alive initially, and then the only reason we avoided any kind of tube feeding.

The upright feeding position was a big help, too. I just met with a mom locally today whose daughter may have mild PRS (no obvious cleft, but definitely micro/retrognathia and high arched palate) and I showed her the upright feeding and her daughter had a much better feed. It's not comfortable, makes it hard to multi task while feeding, and there goes cosleeping (well, at least cosleeping AND nursing in bed, you can still cosleep if her apnea is no longer a concern, but you have to sit upright every time to feed, which is a pain) But it minimized Connor's aspiration, which was a big deal, because his aspiration was almost enough for us to agree to the tube at one point, especially after he had his first pneumonia. It was really scary!

Definitely ask about the obturator...I'm surprised no one offered to let you try in the hospital. And if you haven't already, call your local LLL and ask around if anyone has ever breastfed a cleft effected baby locally that you can meet with. I was able to get referred to a lactation consultant who was very knowledgeable in swallowing disorders and was a huge help to me, LLL knew of her and referred me to her. I still take Connor to see her regularly, just to show her how well he's doing now.

I think that it's a good sign that she tries to suck on a pacifier...keep offering the breast! Try pumping first to draw out your nipples and get the milk flowing, then see what she does. Even if she doesn't get any milk out, she's learning to find comfort at your breast, which is huge.

 

[ksera05]

Hi! I know almost nothing about PRS, but I figured I'd post and say hi anyway because we also live in Nashville

, are at Vanderbilt a lot and spend a lot of time at Bill Wilkerson for feeding therapy and at 100 Oaks for everything else. My 2.5 year old is a former 24 weeker with a lot of delays who is also g-tube fed. Anyway, if you ever need to know anything about our experiences with Vandy's therapy, feel free to PM me!

 

[gaelicgoddess]

Thanks again everyone for your responses, advice, experiences. I really appreciate it.

And hi Sarah!

Nice to see so many Nashville/Vanderbilt moms here. Is Bill Wilkerson a doctor? So far we have Dr. Goudy as our ENT. The speech pathologist we saw while in the nicu was Gwen Provo. I'm hoping we will get to work more with either her or someone else on these feeding issues more. I have so many questions.

These feeding issues make me feel so lost and are so frustrating. It's so time consuming every day to find time to pump enough to increase my supply, try to feed Alana from the haberman bottle and, finish up what she doesn't eat through the g-tube. I'm so determined for her to eat completely by mouth so we can get this g-button out. I really hate the g-button. It leaks and her skin is so irritated by the stomach acid that leaks out. I have no idea how long it's going to take for her to be able to eat completely by mouth though. She's getting 30ml now out of the haberman......a couple weeks ago she could only get 10ml or less. I wonder if there is something we could be doing to get better at this? Or does it just take time/growth. I haven't tried any other bottles except the haberman. And I'm so worried that she is getting enough to eat and is gaining weight. She is still so tiny and I want her to grow so her jaw will grow. But the docs say she will probably burn extra calories working hard to eat. And she's been spitting up a little bit too. Not sure if she is getting to much air while eating, or air while being fed through the g-button, or if it's reflux. Or maybe we are overfeeding her since she is not in control of how much she is eating?

I continue to try and get her to latch on, but she can't. She tries. She's not refusing to try anymore. But she is not creating enough suction (because of palate?) or seal (because of recessed lower jaw) to get enough breast tisuue in her mouth and draw the nipple out. Basically if I don't hold the nipple in her mouth it just falls out. She can't hold on to it at all (nor can she hold on to a pacifier). She's trying so hard to suck but nothing is happening. I guess the only reason the haberman bottle works is because the nipple is long, doesn't retract, and I can hold it in her mouth and help squeeze the bottle to help her. If she could just latch on then I could nurse for comfort or maybe even try an SNS. But I just not feeling confident that that's an option anymore.

 

[MotherWhimsey]

Gwen kicks major butt! She is awesome! She's our SLP that does our swallow studies. She's one of those people that the second they open their mouth you know that they know what they're talking about. That and she's not one to beat around the bush, she'll say it like she sees it.

As for the leaking button, it shouldn't be leaking so much. There are a few reasons it can do that. Have you checked the water level in the balloon? If there aren't 5 ml in there then put them there and that should help seal things up. Does her button hang out? A loose button doesn't seal properly will leak a bit. Something you can do to mitagate the irritation is soak split gauze or cloth tube pads in maalox. let them dry and put them on and that will instantly neutralize the acid on contact and help with irritation. Just make sure to make a lot at a time so you have them on hand and change them a few times a day. The button gets easier. I can't imagine not having one now and it doesn't often bother me. My son has had his for 2 years now.

There are usually tricks around most things with the button and someone somewhere will have a tip. So if you have anymore button issues, post it and you will probably get a ton of things to try.

 

[AndVeeGeeMakes3]

Quote:

Originally Posted by MotherWhimsey Something you can do to mitagate the irritation is soak split gauze or cloth tube pads in maalox. l

That's an awesome idea!!! Never heard of it.

And, yes, the button gets easier, like almost not noticeable. VeeGee hates it nowadays, but I think that's mostly being connected to something not of her choosing (SPDey kind of stuff). I've popped it in by myself bunches of times - and this with a kicking and screaming toddler.

As to the spitting up, I think this is pretty common with PRS kiddos. VeeGee ended up having to have a nissen because of it (another hard decision that I know saved her life, but that makes me sad every time she retches violently). I'm so sorry that Alana is struggling to eat. I know you want, badly, to get her out of the g-tube, but I encourage you to kind of try to relax about that. One thing at a time. As long as she continues to get oral stimulation, she's got a good shot of learning to eat sooner rather than later.

How is her breathing? I know you said that at first the occlusion was pretty bad - has that gotten better?

I LOVE DR. GOUDY. LOVE HIM!!!!!!! I mean, like almost have a crush on him

: He really made a huge huge difference in VeeGee's care when we switched to him from our Memphis A-hole of a doctor (sorry

). And he works in conjunction with Kevin Kelly a lot. Dr. Kelly is who did VeeGee's palate repair and p-flap/sphincteroplasty. One thing I always like about a doc is when the nurses seem to genuinely respect him/her. That's so the case with Dr. Kelly.

 

[gaelicgoddess]

Quote:

Originally Posted by MotherWhimsey Gwen kicks major butt! She is awesome! She's our SLP that does our swallow studies. She's one of those people that the second they open their mouth you know that they know what they're talking about. That and she's not one to beat around the bush, she'll say it like she sees it.

That's what I keep hearing. It's great to hear such great things. I'm hoping we will see her soon at a follow-up appt. Is she the one that will help us with oral therapy/learning to eat by mouth?

Quote:

As for the leaking button, it shouldn't be leaking so much. There are a few reasons it can do that. Have you checked the water level in the balloon? If there aren't 5 ml in there then put them there and that should help seal things up. Does her button hang out? A loose button doesn't seal properly will leak a bit. Something you can do to mitagate the irritation is soak split gauze or cloth tube pads in maalox. let them dry and put them on and that will instantly neutralize the acid on contact and help with irritation. Just make sure to make a lot at a time so you have them on hand and change them a few times a day. The button gets easier. I can't imagine not having one now and it doesn't often bother me. My son has had his for 2 years now. There are usually tricks around most things with the button and someone somewhere will have a tip. So if you have anymore button issues, post it and you will probably get a ton of things to try.

The button leaked a lot after surgery. It is better, but stilll oozes when she cries or bears down. Before we were discharged, they put 6ml in the balloon and said we couldn't put anymore then that. It fits pretty snug with the gauze, but is a tiny bit loose without it. I forgot about doing the maalox. Maybe I'll try that for her skin. We were given that new skin stuff to paint on her skin before putting the gauze on. It has helped, but she still has some irritation. We follow-up with the surgeon next week.

 

[gaelicgoddess]

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Originally Posted by AndVeeGeeMakes3 That's an awesome idea!!! Never heard of it. And, yes, the button gets easier, like almost not noticeable. VeeGee hates it nowadays, but I think that's mostly being connected to something not of her choosing (SPDey kind of stuff). I've popped it in by myself bunches of times - and this with a kicking and screaming toddler. As to the spitting up, I think this is pretty common with PRS kiddos. VeeGee ended up having to have a nissen because of it (another hard decision that I know saved her life, but that makes me sad every time she retches violently). I'm so sorry that Alana is struggling to eat. I know you want, badly, to get her out of the g-tube, but I encourage you to kind of try to relax about that. One thing at a time. As long as she continues to get oral stimulation, she's got a good shot of learning to eat sooner rather than later.

I had heard that spitting up/reflux is common with PRS.

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How is her breathing? I know you said that at first the occlusion was pretty bad - has that gotten better?

She has only had breathing episodes in the very beginning. After two weeks she outgrew them on her own. She only occludes her airway when she cries or is surprised. But she always fixes it on her own immediately. She has an apnea monitor at home, but has never set it off. They almost didn't send us home with one, but decided to just in case. I only have to put it on at night. They said we probably won't even use it after one month.

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I LOVE DR. GOUDY. LOVE HIM!!!!!!! I mean, like almost have a crush on him : He really made a huge huge difference in VeeGee's care when we switched to him from our Memphis A-hole of a doctor (sorry ). And he works in conjunction with Kevin Kelly a lot. Dr. Kelly is who did VeeGee's palate repair and p-flap/sphincteroplasty. One thing I always like about a doc is when the nurses seem to genuinely respect him/her. That's so the case with Dr. Kelly.

LOL All I'm going to say is I agree about Dr. Goudy. I haven't met Dr. Kelly, but maybe we will soon? We follow-up with Dr. Goudy next week.

 

[RoadWorkAhead]

Hey you! IDdn't expect to run into you here, but know that if you ever have g-tube questions, Kyler has given me a run for my money with ehrs. Its just our norm now, but I remember the beginning challenges all too well. Congrats on the new little one!!