Sep
1
2011

RES-Q Wedge – weekly review

 

 

Recently, It’s a Preemie Thing teamed up with Res-Q Wedge to host a giveaway to one lucky preemie mom to give a preemie some relief from acid reflux.  My son Spencer had horrible reflux and I wish I had known about the RES-Q Wedge!

One of the things we requested from the winner was a weekly update on how her baby is doing so others can follow the progress as well.  After all, don’t we all learn from other preemie parents? 😉

About Allison:

Allison was born the beginning of April, she was 6 weeks early and born with a condition called CDH (Congenital Diaphragmatic Hernia). What this means is that as a fetus her diaphragm did not form properly which allowed her stomach contents to enter her chest and hinder lung development.  She was diagnosed at 20 weeks gestation and given a 50% chance to survive. After birth they discovered that Allison’s condition was far worse than expected and that she also had two small holes in her heart.  After major surgery at 5 days old, she was in intensive care until she was 2 months old.

After arriving home, she was also diagnosed with severe MPA (milk protein allergies) and GERD (gastro esophageal reflux disease).  To say the least, she has had some feeding issues.  She is finally starting to get on track with her weight gain now at 5 months old with proper medicine dosing and medical grade hypoallergenic formula.  Aside from this it has still been a constant battle to keep her comfortable, and to keep food in her belly.  We have of course bought the best bottles money can buy, and practice all the necessary lifestyle changes.  Even still, we have consistent vomiting and many restless nights.  We are so excited to have won the ResQ Wedge in hopes that it will give both Alli and I some long awaited restful nights.

Week One

I was so excited when UPS came up the front steps with a big box marked from It’s A Preemie Thing! I didn’t even give him time to knock before rushing to the door.  Right away I burst open the box and threw the sling into a load of wash and wiped down the wedge to prepare it for our first night.  I got it all situated in the crib, ladybug sheets and all.  Alli had her bed time bath and bottle and started drifting off to sleep so I nestled her in, she looked so cozy.

I flicked on the monitor and started to head out of the room…BLAH!  She threw up all over everything, and it didn’t even wake her, but of course I woke her in order to get her wiped up and into a new set of jammies.  Realizing that I would now have to rewash all of her bedding, Alli spent her usual night with mom.  Since our first night, Alli has been put to bed on her wedge every night.  She has had a six day stretch without throwing up at all…can’t say for sure it is related, but it is a record for her!

She has had trouble staying asleep thus far, only going one and two hour stretches, but I think it will just take some getting used to.  We are planning to try out some tummy time on the wedge this week, so I will let you know how that goes in the next weeks review.

Allison asleep on her new RES-Q Wedge

Week Two

This week I flipped the wedge to do the tummy sleeping position per a ResQ Wedge expert’s advice. They have been so great contacting me to see how things are going and to answer all of my questions. Robynne, the therapist I have been in contact with from ResQ, explained how in the tummy position baby’s ability to breathe and her gastric emptying better, which is important for babies with conditions like Alli’s. She said that because of this she may sleep better. And she was right!

Week two - working those muscles

Alli was able to go three and four hour stretches in this position rather than the one or two she was going on her back.  Robynne also explained how tummy sleep is safe on the ResQ Wedge because of the way it is scooped around the airway region.  This has eased my mind since there is so much talk about SIDS these days.  The only hard thing has been getting baby to go down in the tummy position, I spend at least an hour getting her to sleep, because nearly every time I set her down in the tummy position she wakes up very angry.  If I can get her to take a pacifier that helps, but she has been on a bit of a binky protest lately.

I am hoping that she will start getting used to it and not only go down better but sleep longer. I have not had a full nights rest since she was born!  Also this week, we have been practicing our tummy play time on the wedge, although Alli still spits up on the wedge like she does with our usual floor tummy time, it has been really fun.  She is able to reach out for her toys while on the wedge which she can’t yet do on the floor. This keeps her entertained so that she doesn’t get bored and roll over which is great because it gets her working more on those important neck and shoulder muscles.

I have made sure that we do some tummy time on the floor as well since the wedge does restrict her from rolling which she also needs to practice. Overall it has been a great week with the wedge. I am so glad we decided to utilize it’s second side for prone positioning.

Week two - getting some tummy time in!

Week Three

Saturday night Allison had a dyspnea attack that put us in the ER.  We assume that it was caused by reflux aspiration. They sent us home without answers after a chest x-ray that looked good to the ER doctor.  With Allison’s special case, any sign of breathing issues puts us on edge.

Monday morning we received a call from Allison’s pediatrician asking that we come in as soon as possible for a follow up to Allison’s ER visit, after reviewing the x-ray they decided that Allison has the early stages of pneumonia.  Fortunately her case is nowhere near severe, so they sent us home with antibiotics and told us to keep a close eye on her.  She has not at all been ill or showed any signs besides this one episode of struggling to breathe, so this surprised me.  The only explanation, since she has not been ill, is that the pneumonia developed due to aspiration.  This also surprises me because Allison’s reflux has seemed so well under control the past few weeks.  She has only thrown up a couple of times in the past month.

She has had some small spit ups, but nothing that all babies don’t normally do.  Anyway, because of this scare and Allison’s diagnosis, we have unfortunately not gotten much use out of the wedge this week.  I have kept her with me through the nights to help keep her comfortable, and to be sure that she does not have any more issues breathing.  I hope to continue working her towards sleeping in her crib on the wedge again next week, but for now I just want to keep her close.

Week Four

Allison has not had anymore issues with breathing this week and is on the road to recovery.  I have tried three times to put her to sleep on the wedge, but each time she threw up all over everything in her crib.  For some reason she has become sensitive to being put to sleep on her tummy.  She has done fine with our tummy time, and tummy time has been our favorite use for the
wedge thus far.  However, she suddenly is unable to be put down this way to sleep as the Res-Q adviser had suggested to help her sleep greater lengths.

So, as much as I love taking apart her crib, washing everything, and reassembling it, my plan for next week is to go back to putting her down on the wedge side for supine positioning.  I haven’t gotten her to sleep more than an hour or two at a time
in this position, but maybe it will just take some getting used to.  My hope is that I can get her sleeping well on the wedge soon, because I know it will help with her aspiration issues – the cause of her pneumonia.

As easy as it is for me to just allow her to sleep with me since she sleeps much longer stretches, I know that the wedge is specially designed to help with Allison’s reflux and hopefully prevent her from getting sick in the future.

 Week Five

Allison enjoying the Wedge (week 5)

So we have switched back to sleeping in the supine position on the wedge this week.  I have been trying various things to make Allison more comfortable on the wedge hoping that she will sleep longer hours.  One thing I notice that seems to make her uncomfortable is that there isn’t support for her neck.  I rolled up a small receiving blanket and made a little donut pillow for her to help with that, since she has mild torticollis so it is good for that too.

Since she is lying supine, and can’t roll over while she is strapped in the sling, this seemed safe to me.  Another thing that I noticed is that her legs just sort of dangle and she kicks herself awake.  For some reason she doesn’t like having her legs swaddled, only her arms, otherwise this would not be an issue.  But since it is, I propped a pillow up under her legs to support them and these minor adjustments have definitely helped.

She has been sleeping a 4 hour stretch on the wedge this way.  Much better than waking every hour or two and hopefully the stretch will get even longer as she gets used to being on her own in the crib.  It has gotten much easier to put Allison down on the wedge as well.  Our ResQ adviser told me to strap her into the sling, then swaddle her and get her to sleep in my arms and then just attach the sling… I am not sure why I never thought of it myself.  I was getting her to sleep then trying to strap her in and swaddle her which tended to wake her.  That being said, the suggestion has helped tremendously.

Allison has seemingly had a bit of a relapse with her reflux these past few weeks, hence the pneumonia.  Her GI has scheduled her for a gastric emptying scan the first of next week, so hopefully he will have some answers and resolution for us.  I know she will sleep better once we get that little tummy of hers working properly!

Enjoying some ResQ Wedge play time!

 Week Six
We had our gastric emptying study and the results came back normal.  This is great news, but unfortunately it means that we don’t have any additional answers about her tummy troubles.  I am however, happy to report that Allison has been doing well with her wedge sleep this week.
She seems to have developed a routine where she sleeps a 5 hour stretch then wakes for a bottle.  Since she still needs those extra calories I expected this.  She takes her bottle and goes right back to sleep for another 3 hours, one more bottle, and a final 3 hours.  She is getting a total of about 11 hours rest and 2 nightly bottles, which is perfect for a 6 month old preemie.
It has been nice to have my own room too!  I have continued to use the pillow under her legs, and the roll for her head and those additions have made a world of difference.  We are still having some nap time issues, but that is a lot easier for me to deal with since I am not trying to get some rest too.  Allison only ever takes a couple of 20 minute naps through the day and I have been told that she should be getting at least 4 hours during the day in addition to her 11 at night, but we will continue to work on it.
I am hoping that I will have a happier baby once she gets a good napping routine down too.
WEEK SEVEN

Nothing has changed for us this week as far as sleeping on the Res-Q wedge.  Alli has kept her 5-3-3 sleeping schedule, and we are doing well with that.   She did spit up on her sling one of the nights so she slept with me while laundry was being done, but other than that she is keeping to her new wedge sleeping schedule.

She just wakes up for 10-15 min the two times to have a bottle and goes right back down.  She has woken up coughing/choking a couple of nights but fell right back asleep, and of course it always scares me to wake up to that and I don’t sleep as well, but I am glad she is okay with it.

She is really having a hard time with feedings this past month and doctors are concerned about her weight.  She has dropped below the 5th percentile for her adjusted age this month, with the normal gastric emptying results they decided to conduct a swallow study and we are waiting to hear back about the results.  She also has an echo scheduled to check up on her heart, obviously we are hoping there is nothing serious going on, but we need to get her back on track.

WEEK EIGHT

After the rough week we had last week, it was so great to have a good one!  Allison gained great weight, and we received normal results back on all the testing they did.  They will be running a few more tests in the upcoming weeks, but it’s looking like things are back on the upswing.

Allison had a few scary choking spells this week, but hopefully her GI will get things figured out with the upcoming testing.  Her sleep pattern has stayed the same and it is working well for us.  Allison had a really fun photo session from Inspiration Through Art, thanks to the tag from It’s A Preemie Thing Facebook.

She has been happier during the day and I have been getting her to nap better, though we are still working on getting a good steady schedule like we have made for nights.  Her OT saw her this week too and says she sees great improvements since her last visit.

WEEK NINE

Allison has continued doing really well.  She actually slept a couple of 7 hour stretches this week, and started taking a whole 3oz at some of her feedings.   The doctors suggested bumping her up to a faster flowing nipple and it has really helped us get more
down her since she tends to wear out quickly.  We also started thickening her bedtime feeding with a little rice cereal as suggested to us on ResQ’s facebook page.

In combination with sleeping on the wedge, it has really helped with all the night time coughing.  Those extra calories have got to be good for my little skinny mini too.  I am certain that she will have gained some good weight by her next appointment.

 

WEEK TEN

Allison is continuing to do very well in my eyes. She is sleeping comfortably, and eating more than she ever has. The doctors are still not content with her weight gain, but we will continue to work on it. Hopefully we can start some solids soon, because I am really hoping that will help.

We attended a feeding clinic as advised by Allison’s therapist, and they basically just told us what we already know. They said she is a “very passive eater.” I think it is a blessing that she eats on her own at all after all she has been through. So many CDH survivors are on feeding tubes for years, and she hasn’t been on one since she left the NICU at 2 months old. She will be 7 months on the 7th! I can hardly believe it was that long ago that we were stuck in that hospital room day after day. It seems like just last month. Has it really taken this long to get her feeling good? As I am sure you all know, the reflux journey is a long one!

 

NOTE:  Alexis had Allison’s pictures taken through Inspiration Through Art  is a non-profit organization that provides our special heroes with complimentary photo shoots, special cards and mail, gift packages, and various  other programs, events, and fundraisers.  What a great organization!!

 

WEEK ELEVEN

We had another good week sleeping on the wedge!  One night Allison even gave us an 8 hour shift.  Then of course she received the booster for her flu shot…so we had a couple of rough nights too…but that is to be expected.

The doctors said her weight gain was okay this month, which is good after the plateau she had over the last couple of months.  She is still low on the charts, but gaining!  She is really babbling lots this week and has started sitting on her own for short periods of time.  It is so amazing to watch her grow and get stronger every week!

WEEK TWELVE

With my final posting all I can say is THANK YOU, THANK YOU, THANK YOU!  To ResQ Wedge and It’s a Preemie Thing, thank you so much for this opportunity.  Three months ago I would have never guessed that Allison would be sleeping through the night in her own crib. It is so nice to get some rest knowing that Alli is sleeping safely elevated on her wedge.  It is also wonderful not to have to clean up projectile vomit night after night.  And to be able to sleep for more than 2 or 3 hours at a time is heavenly.

Allison has been sleeping 6 to 9 hours without a peep this entire week, then she goes right back to sleep for another 3 or 4 after downing a quick bottle.  I truly felt like I was never going to rest easy again when we brought Allison home from the hospital.  So glad I was wrong!  IAPT and ResQ gave so much more than just a wedge in this giveaway.

Allison in an It's a Preemie Thing onesie!!

About the Author: Alexis

7 Comments + Add Comment

  • Good sleeping and feeling great vibes to Miss Alexis! I hope the RES-Q Wedge offers a solution for you!

  • Praying for more and more improvement for your sweet girl Allison!

  • We are so glad to hear Alli’s vomiting has subsided since being positioned on the RES-Q Wedge. Emesis or vomiting is typically the first symptom the wedge addresses because of the elevation to 30-45 degrees. Settling on the wedge may take a little more time due to the fact that infants become settled in their sleeping patterns in the first 3 months of life. Following some of our helpful suggestions in the 7 minute instructional video at our website (www.resqwedge.com) should help Alli adjust to sleeping on the wedge. Alexis is already swaddling her for containment as shown in the picture.

    I have recommended that Alexis trial Alli on her stomach (on the prone side of the wedge) swaddled during supervised naps in the daytime. In the prone position, the gastric pool of contents lies furthest from the inlet of the esophagus or food pipe. This means Alli should have less episodes of reflux. In addition, the arms and legs are stationary on the wedge. When the reflux comes up, infants startle less in this position in comparison to the supine or back lying position. I will stay in touch with Alexis to make sure we can get Alli as comfortable as possible 🙂

    Robynne Elkin, MOT, OTR/L, CKT
    Pediatric Occupational Therapist

  • Alexis:

    Great job with the supine (back) positioning of Alli on the wedge! You are correct when you mentioned the reflux startle. Babies who sleep on their back often wake when the reflux comes up and they startle because their arms and legs are not stationary. When babies are lying in the prone position or on their tummies, the gastric pool of contents lies furthest away from the esophageal inlet, thus reflux occurs less frequently in this position when compared to back sleeping. In addition, the arms and legs are on a surface and when the reflux does make it’s way up, the babies typically do not startle as much.

    Although it is not recommended by the SIDS Alliance or the American Academy of Pediatrics (AAP), it is a known fact that reflux occurs less frequently in the prone and side lying positions compared to the supine position just because of where the anatomy is in relation to the physiological position of the body.

    We often recommend placing a blanket or pillow at the bottom of the wedge so the infants can brace their feet if startles continue to awake them just as Alexis did for Alli. Our 7 min. instructional video at http://www.resqwedge.com also discusses and gives instruction about keeping the head in midline using rolled up washcloths.

    With Alli’s pneumonia due to aspiration, sleeping on the wedge is highly beneficial. It will lessen the reflux episodes and help Alli breathe better. When an infant aspirates, it is important to determine through a modified barium swallow study whether or not the infant is aspirating on liquid during the swallow (milk or formula going down the pharynx and into the trachea/windpipe) or aspiration on reflux coming up (milk or formula coming up from the stomach into the esophagus and then going over into the trachea).

    Robynne Elkin, MOT, OTR/L, CKT
    Co-Inventor RES-Q Infant Wedge/Pediatric OT

  • […] Giveaway! If your baby has been diagnosed with reflux by your physician and you are willing to share your experience, you could win a RES-Q Wedge here. See how this previously worked for Angelina Newman who was the lucky winner of a similar giveaway on It’s a Preemie Thing. […]

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