Saturday, February 8, 2014

Bottom's Up

Family and friends ask about the babies all the time.  When we tell people that they are both doing great, except for a birthmark that Rylee has developed, it tends to get brushed off.  A birthmark?  Pshh.  That's no big deal.  I admit that's what we would have thought too, except...

It kind of is a big deal when it's on your bottom, an area full of bacteria on a constant basis.  

About a week after she was born, we noticed a reddish spot on her bottom.  Everyone (us, doctor, nurses) thought it was diaper rash, and we started treating it as such.  A few days later, it got bigger.  Another day later, I was changing her diaper and I thought it was even bigger and looked concerning.  The nurse contacted the doctor.  As it turned out, the diaper rash was actually a hemangioma.

Hemangioma: A benign tumor made up of blood vessels in the skin or internal organs.  It usually appears within the first few weeks of life and continues to grow throughout the first year, but then starts to shrink and mostly disappears by the age of 5.  Sometimes there may be a faint scar remaining.

Although the word tumor freaked me out a little, I thought, okay.  A birthmark.  If she's going to have one like this, it's in a great place.  Nobody can see it.  But then the doctor wanted to order an ultrasound for Rylee, because apparently hemangioma's can also grow internally on the organs, which then is a major concern.  Okay, freaked out again.

The ultrasound came back fine.  The doctor's words were "unless she wants to become a butt model when she gets older (because it might leave a little scar), she will be okay."  So we relaxed and didn't worry about the hemangioma.  She better NOT want to be a butt model!

After a few more days, it became apparent that this particular hemangioma was going to be a bit more troublesome than first thought, again, because of the location.  It was becoming rather large.  Hemangioma's don't just grow on the skin surface, but also grow outward and become raised.  Now the concern was that it might continue to grow in a way that could impede her bowel movements.  The other issue was that she did in fact develop a little diaper rash on the hemangioma itself.  This spot of diaper rash started to become ulcerated.

The doctor contacted the wound care department at this point.  Now that the hemangioma was ulcerated, we couldn't simply treat it with Aquaphor or Desitin.  We also couldn't just wipe her as you normally would. Diaper changes became quite the process.  Now we had to place a chuck's pad underneath her, squirt saline water on her bottom, and pat her clean instead of wiping.  Then we put Stomahesive powder on the ulcer and cover it with Vaseline.  The powder and Vaseline form a paste that fills the ulcer, which is basically a hole in her little bottom.  The idea was that this would keep any urine and feces from getting in the hole, allowing us to just pat the top layer clean.

The hemangioma kept growing, as they said it would through her first year, but the hole was also getting bigger.  The doctor took some pictures to send to a pediatric dermatologist up in Portland at OHSU (Oregon Health Science University) for evaluation.

They decided to prescribe a medicine called Timolol, which is actually a beta blocker for the eyes, but they have found it to help shrink hemangiomas.  This is a topical medicine in a liquid gel form.  We started out putting one drop on the hemangioma twice per day.  There is also a systemic medicine that can be taken orally that does the same thing, but because of the potential side effects and the fact that she was a preemie, they opted for the less potent Timolol.  Both medications have the same side effects, but because the Timolol is topical, it's not as potent.  Side effects include bradycardia (decreased heart rate) and low blood pressure. They wanted to start the medication while she was still in the hospital and on the monitors.  She didn't have any problems with the medication, thank goodness.

Now that Rylee is out of the NICU, we have to continue being diligent about keeping the ulcer clean to try to prevent infection, and applying the medication.  We were told that it is pretty much a matter of time before it gets infected because it's in such a high bacterial area.  Her pediatrician will continue to monitor for infection, but Rylee also has to see the doctor at OHSU, which is the only place in the entire state of Oregon with a pediatric dermatologist.  Actually, Tony looked it up.  OHSU has the only pediatric doctor this side of Denver.  I'm very thankful that we live only an hour away from them, considering we have to make the trip at least once a month.  They have increased her Timolol dosage to two drops, three times per day.

Diaper changes have become a pretty traumatic event in our household.  Our poor little girl screams her bloody head off for every diaper change, but most especially when she poops.  She basically has a crater eating away at her bottom.  Look at your thumbnail.  That is about the size of the ulcer, which on her little bottom is actually pretty big.  Since we've been home, the ulcer has gotten a little bigger and continues to get a little deeper.  The hemangioma itself covers almost her entire butt cheek, but that's not the problem.  The Vaseline sometimes works to keep the hole covered up, but it seems that most of the time we end up having to dig the poopy out of the hole. We try to be as careful and gentle as possible, but we know that it hurts her terribly.

Last week I ended up calling the dermatologist because it just seemed to be getting so much worse.  The Timolol appeared to be working, but it is only treating the hemangioma, not the ulcer.  It seems like we are doing nothing to treat the ulcer itself.  I also thought that maybe it was getting infected.  I kept noticing a foul smell every time I changed her and it looked like there was maybe a white spot developing in the ulcer.  She was also getting more and more cranky.  The doctor prescribed a 7 day antibiotic for her over the phone.

After being on it for a week, I do think it helped the infection, but it hasn't helped her crankiness or pain level.  She is a very fussy baby.  And fussy is kind of an understatement.  I guess I don't blame her.  It looks so incredibly painful.

I called the dermatologist again today, just to confirm that we should stop giving her the antibiotics now that we've run the 7 day course.  They said to keep monitoring for infection.  If she gets a fever over the weekend, we need to take her to the ER.  Otherwise, keep doing what we are doing.  Our next appointment with them is at the end of the month.  At that time, there is a very good chance they will change her medication to the systemic/oral beta blocker because she will be older and a little bigger (but still a baby!).  That is a little scary to me.  We won't be in the hospital hooked up to monitors this time around to know how the meds effect her heart rate and bp!

I don't want to rush this baby stage of her life, but I told Tony last night that I do want to skip forward to when we don't have to deal with this ulcer anymore.  I love the baby cuddles.  It's one of my very favorite things in this world, but I don't love never being able to put her down.  She almost always cries once we put her down.  A lot of times she will cry scream for maybe 30-60 seconds and then just suddenly stop, so sometimes we let her cry through it.  But then she usually does this every 5-10 minutes, so she is not getting a good solid sleep at all.  After every poopy diaper, we need to hold her just so we can comfort her. Sometimes it takes awhile to calm her down.  Occasionally, she gets so worked up that she spits up what seems like her entire last feeding.  Sometimes we have to just let her cry because her brother needs fed, or it's his turn to be held.

I hope there comes a time when this is all behind us and she becomes a happy baby.  I hate to think how this is forming her personality for the future.  I worry about how this may effect her development.  I hate having to give her medicine at such an early stage of her life.  I want to be able to snuggle her and play with her, instead of constantly needing to comfort her.

I hate to rush through this stage of her life, because I know it will all pass us by so quickly, but I really would like to skip ahead so she isn't spending so much time in what seems like constant pain.  The thing is, if any adult had this kind of ulcer that was eating away at them and looked like hamburger...I'm not sure how a grown person could handle it either.  She's just a little baby!

She has another hemangioma on the back of her neck, between her shoulders.  It is much smaller, but will also continue to grow through her first year.  She has a few other specks on her body, but they don't amount to much at all.  None of these are a concern and will eventually go away.  The one on her bottom will too, but unfortunately it's developed this darn ulcer that we have to contend with in the meantime.

At least I shouldn't ever have to worry about her being a butt model.


33 comments:

  1. OH bless her heart! And your heart too! I bet this is tough on momma!! I'm saying prayers for you guys!

    waitingforbabybird.com

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  2. Awwww poor Rylee- it sounds so uncomfortable :(. Hang in there mama!

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  3. Ouch! Poor Rylee! I had a hemangioma on my back until about 8 or 9 years old when it finally went away. I don't think I had any problems with it. I hope it gets better for her soon!

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  4. Poor little girl, that sounds awful. Can they remove it? Clara has the tiniest hemangioma on her pinky of her right hand. I know there's a blogger whose little girl had one on her neck removed. Maybe you could connect with her?

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    1. Something about where it's at that they don't want to remove it. I can't remember the exact reason though.

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  5. aww poor Rylee! I am so sorry that she and you have to deal with this! I am sure you are doing an amazing job taking care of her and that is what will stick with her!

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  6. Is there a way you could get a low dose pain reliever for her? Even just a little pain medication given a half-hour before a diaper change could make the process a little less traumatic for both of you.

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    1. We do give her infant Tylenol on occasion, but sparingly so as not to mask a fever since we are supposed to watch for that.

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  7. Poor girl ! That must be so hard for all of you! I think all you can do is be as aggressive as you can about getting her in to be seen ASAP (that squeaky wheel idea is true in cases like this). Waiting until she gets some raging infection is not an effective game plan for her medical care. Video one of her diaper changes so they can see her pain (and yours). Describe in detail the aftermath and how long it is until she's comforted. :( They need to do something for your girl.

    Shawn has a few hermangiomas-a storm bite above his eye and two larger ones on the back of his neck. He also had u/s to check for internal issues just in case. He's six, and although they are slightly smaller, they are still around.

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    1. She's had the ulceration since being in the NICU, and we made the trip to Portland within a few days after discharge from the hospital, so she has been seen. Her pediatrician also checks it every time we go in. I've done some research on line and basic care for ulcerations is to keep the area moist using Vaseline. The medicine for the ulceration is doing what it is supposed to and shrinking the hemangioma. We didn't think it was enough either, but because she is a preemie it wasn't safe to do anymore aggressive treatment yet. We will just be loving on her and doing the best we can to keep it clean. We've been in contact with the doctors regularly and they know the situation. As much as I'd like them to do more....

      She also has a stork bite on her forehead :)

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  8. Poor little girl! I'm so sorry you all are having to deal with this. I hope that it goes away soon. I'm not at all comparing to you when I say this but Emma screamed every time we changed her to for the first 2 months of her life. Mainly because we just couldn't get rid of this horrid diaper rash. It is so hard to hear them in pain like that. I will tell you that although it feels like an eternity away it will get better. And before you know it she will be smiling and laughing all day. Sending you prayers!

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    1. That's what I am hoping for! A smiling happy girl :)

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  9. Poor gill! And poor mama! That sounds awful. My son had a tiny one on his head that went away by about 18 months, nothing like this though. Hopefully you can get the ulcer cleared up soon, FWIW, my son was a very unhappy baby and I worried he'd never be happy, but he's the happiest toddler now.

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    1. Heather that is really good to know! I've been trying to think of all the people I know that were very unhappy babies and how they are as teenagers/adults. That's all we really want as parents, right? To raise our babies to be happy and healthy?

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    2. Apparently I was a *really* unhappy baby and I'm pretty happy now. She will get there. Once she starts to get more mobility I bet you'll see an improvement. Elliot seemed to turn a corner once he could sit unassisted. Don't doubt yourself (which is hard, I know), you are doing am awesome job. :-)

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  10. Poor baby. :( I hope the ulcer clears up and she feels better soon.

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  11. Even though the butt model remark completely cracked me up, I feel so bad that rylee is going through all the discomfort and I know it makes momma sad also. I hope this is resolved sooner than later.

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  12. Poor baby! Hopefully things start to get better..

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  13. Sending prayers your way! Hope the appointment at the end of the month will get some of your questions answered! That little girl knows that she is loved and you will all get through this heartbreaking period. Love, Auntie

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  14. Oh the poor girl! I can only imagine how tough this is on you, hubby and baby girl. I totally understand not wanting to rush the baby stage, but I know I would feel the same way. I hope the ulcer passes quickly and she stops being in so much pain.

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  15. oh, your poor sweet girl. i'm so sorry you're dealing with having a child in pain just as you first become a parent. i can't imagine how difficult it must be for the two of you to know that there is only so much you can do to minimize her discomfort. please please don't worry about how this will affect her development and personality. bottom line is that, if anything, she is learning that mommy and daddy love her very much, are incredibly dependable and secure, and are comforting her when she feels scared and hurt. you can't make the pain go away, but you can make her feel safe and secure, and it sounds like you're doing an excellent job at that.

    this will get easier, momma. hang in there. she will get through this and you will see her actual little self shine through. something like this is not enough to change a child's personality. i promise.

    i'm thinking of you guys!

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  16. Poor Rylee and I know this is probably so hard on you too. Many prayers for you guys!!

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  17. Aw poor sweet baby and poor Mommy too! Prayers that this clears up soon! Hang in there!

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  18. This sounds so, so hard. My heart is just breaking for her, and for you guys too! I've heard that this is more common in twins. Have you heard the same?

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  19. Ouch, that's a tough spot. 3m tagadem dressing on amazon.com There are mamy different sizes and prices. Thr comments are helpful

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  20. It's so heartbreaking to know a baby is in pain and you're doing everything you can and it doesn't seem like enough. Poor Rylee and poor mommy and daddy. <3 hugs to you all.

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  21. I'm so sorry. This must be so tough for all of you. Praying it gets better soon and you can all get some more sleep!

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  22. Oh how terrible for you both! Have you looked into Elimination Communication? Maybe not messing a diaper might help with the pain and cleanings... Good luck.

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  23. Poor little baby and poor mama too! I hope she improves soon and diaper changes are no longer traumatic events. And as for unhappy babies, one of my twins has colic and reflux and screamed for hours and hours on end every single day and absolutely nothing would comfort her. She's now a very bright, verbal and yes, happy toddler so there is a light at the end of this tunnel!

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  24. As a former labor and delivery nurse I wonder if you could get the doctor to prescribe you a topical lidocaine gel to put on the ulcerated area during diaper changes? Even oralgel, which is over the counter will numb the area for a couple of hours will work. Or a sunburn spray, anything that does not have alcohol in it but contains one of the Caines should work. We used a sunburn spray for new moms on their incisions and tears after vaginal births. And if you can use it there, it must be pretty safe! Of course, check with your doctor first.

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  25. I'm so sorry little Rylee has to go through this! It sounds painful and scary. Sorry for you too, Amber - after all this waiting you deserved some happy time with your babies.
    Hang in there. I hope it get better soon.

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  26. Poor thing! It's so hard to know they are in pain. This is nowhere near what you are dealing with but our Riley had an awful diaper rash with open sores and raw skin that just wouldn't go away. I think it was caused by thrush. She was in so much pain and just screamed through every diaper change. Now we are dealing with reflux and had to put her on medication for that pain. It's so hard to always have to comfort them when you want to snuggle and play and just enjoy them. Thankfully, they grow out of all of this. I hope she feels better soon.

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