Written from a mother's perspective in case it helps anyone else out there going through a similar situation. (I have 10+ years of medical background as a medical assistant, so in that way, I felt I understand procedures and treatments but going through this as a mother is a whole different experience!) I have gone back and forth about wanting to post anything about my baby and the pictures show what our little guy has gone through, they are not for everyone to see. But if your child is going through surgery or has a mass, I just wanted to be able to share our story to help. (MOST of the notes were copied right from my phone from texting back and forth with two friends that are nurses- this was a great way to keep a journal!!)
Benjamin was born with a mass that grew from his tailbone (Sarcococcygeal teratoma) and another mass wrapped in his spinal cord (tethered spinal cord). Neither of these showed up on my 20 week ultra sound or in the blood work that was drawn. We knew right off that something didn't quite form right, he had a little 'tail-type' growth at the base of his spine. Like all babies, their skin is pretty red right at birth so it was hard to tell that he also had a type of birth mark on the whole left side of his buns. We scheduled an ultra sound for the next week... the ultrasound was very easy for Benjamin. We were in the room with him and he was able to just lie on the examining table. The tech explained to us that he thought Benjamin had a tethered spinal cord. And he made us feel comfortable that this was actually an 'easy' fix with surgery. Symptoms of a tethered cord that are not found at birth could show up later as trouble walking, back pain, stiffness, incontinent (I have heard stories of kids around kindergarten age to start wetting/soiling themselves at school, and how sad/humiliating this would be, and for the child and parent to not know that this is from an actual medical condition that could be fixed! Or children seeing their doctor for low back pain/stiffness, and this going untreated for years since kids don't usually have back pain) We don't know the degree of which symptoms our Benjamin would have shown in the future, but we feel blessed to have found out early before any damage was done.
As a mother, even the MRI was terrifying to me! The staff at Doernbechers was amazing. They called the night before so I could actually ask the anesthesiologist any questions and they explained the whole procedure. I still cried when they took him away, I was terrified of the anesthetic and how he would react to it. They assured me that he wouldn't feel any pain. They watched him very close and he did just fine!! He did have little marks from the tape on his face; they taped his eyes closed also during the MRI... The MRI confirmed that the mass on the outside was connected and started growing from the coccyx (called a sarcococcygeal teratoma) luckily this was caught right at birth so it wouldn't grow bigger or become cancerous.
Benjamin's neurosurgeon (Dr. Wehby) decided that a pediatric surgeon (Dr Butler) would have to take care of the tailbone mass first before she could do the surgery on his spine. (Her first plan was to go in at the same time and take care of both.) Knowing the issues that we ran into with his birthmark skin not healing, it is a good thing we did the surgeries one at a time. Although, I did leave the surgeons office crying, I just couldn't imagine the pain my little one would go through when she told me that he would need to have his tailbone removed also to insure that she removed the entire growth.
Then I had to try to get the ulcer on Bens buns to heal before the surgery. She did say she would try to remove part of the sore also and a portion of his birthmark, but I didn't want an infection around the incision area.
5/7 Surgery to remove the sacrococcygeal teratoma today.
Anxious to have it over with and start the healing! (kinda wish it was August right now and that all this was behind us (no pun intended! :) It's heartbreaking to go through any medical procedures with your kids!
Anxious to have it over with and start the healing! (kinda wish it was August right now and that all this was behind us (no pun intended! :) It's heartbreaking to go through any medical procedures with your kids!
Ben's doing good now. Had some breathing troubles (loud strider breathing) after because
his throat was swelling from tube. Had a nebulizer treatment and doing better. Just in
pain, Dr. Butler said it's a lot of trauma for a little guy to go through. She said she got the entire mass out and his tailbone so there's no chance of anything growing back. Doctor doesn't think it's cancerous.
She left the ulcer since I have it halfway healed. But the nurse said she'll ask
for a wound consult too since the hemangioma will still be there and we could
also have future sores. Now we can snuggle. :)
Jake face-timed me to show me his tears. He wants me
home!
5/8
Just met with her. We'll do the dust powder and spray. It
really does look pretty good compared to what the ulcer had looked like 2 weeks
ago. Now if I can keep it that way.
They said he can go home tonight. Had 101 temp but Tylenol
brought it down....
Mother's Day...home snuggling baby!!
5/12
This picture is kind-of awful.... So Sunday I thought the dermabond that was in line with the
sutures was rubbing a new sore on Benjamin. By Monday am it was the whole
length of the suture line. I took a picture and called his surgeon. (Told them
I wanted to bring him in and I could send picture) they just made him an appt
for today. I gave Ben a shower and clean his buns, then when he was on his
stomach with his buns drying he moved and I could see it all open up. We
brought him to Randall's last night and he was admitted. We had to wait for hours in the ER just to get seen, knowing all along that he HAD to be admitted... UGH! They did a wound culture in the sore -so awful, but Benjamin was so tough! I can't believe all he's going through and how strong he is!! He's an amazing little guy!! They thought they'd
put him under anesthetic today and close it up (I guess it's the whole incision
opened up) now they just had wound nurse come and they say they'll just pack it
with silvadene. He'll stay tonight too. Have you seen this before? I can't
believe this can close and heal. Sorry if some of this doesn't make sense, I'm
beyond tired!
5/12
I so hope it works. This am when surgeon came in she thought
I could go home today. I kinda refused to leave😊 the yellow in picture
is the derma bond. Wound care nurse is the one that says Hibiclens and
silvadene. I'm trying to be tough!! Benjamin sure is... I can't believe how bad
his buns look and he was smiling at the nurses!
One of the Drs from the pediatric surgery team just came in.
He said they've all been talking about it and discussing with other surgeons.
They might do surgery in am to close the bottom half of the wound so they can
do a wound vac also.... Benjamin is amazingly tough! :)
5/13
Plan is surgery around 3 to suture up the lower end (bigger
sutures so it won't come out.) leave top half open to clean also...
Anesthetic again but no breathing tube since his throat was so bad last
time.
He's SOOO hungry, but I can't feed him til after surgery! Breaks my heart, yet he is so tough and handling it so well!
This is how he was sleeping right before they took him to
surgery! Saying a prayer 😊 (just finally took him
in at 4- now it's been 8 hours of no milk😕)
Out of surgery, he's doing ok. They didn't use
breathing tube but he's still breathing like last time with the loud strider
sounds. So he's getting a breathing treatment. Dr. Butler ended up stitching it
all closed and put in a drainage tube....
While trying to calm him down today, i started humming to him, not realizing what song I was humming... "Count your many blessings" is what had come to my mind! Brought tears to my eyes! This little guy is such an amazing blessing to our family. He has changed us all, and definitely counting our blessings that he is going to be ok. There are a lot of other families at Doernbechers going thru worse medical issues than we are! Here's the words to the song...
- When upon life’s billows you are tempest-tossed,
When you are discouraged, thinking all is lost,
Count your many blessings, name them one by one,
And it will surprise you what the Lord has done.
Count your blessings, name them one by one,
Count your blessings, see what God has done!
Count your blessings, name them one by one,
*Count your many blessings, see what God has done.
- Are you ever burdened with a load of care?
Does the cross seem heavy you are called to bear?
Count your many blessings, every doubt will fly,
And you will keep singing as the days go by. - When you look at others with their lands and gold,
Think that Christ has promised you His wealth untold; - Count your many blessings—*money cannot buy
Your reward in heaven, nor your home on high. - So, amid the conflict whether great or small,
Do not be discouraged, God is over all;
Count your many blessings, angels will attend,
Help and comfort give you to your journey’s end.
5/14
Tethered cord. So they'll keep that appt for now and if
Benjamin isn't ready/healed up then we'll push it back. No silvadene. Just the
Bactroban on ulcer. And I am using a string to put saline into the drain to
help keep it clean. Just worried about it trying to come out sooner. It only
has one stitch to hold it in. They want him to have baths and it seems like him
moving around will start to pull the drain out. If so I'm thinking I'll still
be able to use the syringe and get a little saline down under the sutures.
It will be so nice to be home and feel clean again! (But
then there's also loads of laundry to fold and kids to feed!)
5/16
I think it's going good. The penrose came out today, but
that's fine with me. It was a pain. I can still get saline sort of into the
site and using the Hibiclens. So I feel like it looks ok. Also using the
Bactroban on the ulcer and now putting silvadene around the top where the tube
came out... It is a big process and he seriously poops again soon as I finish!
He nursed a lot more in the last 24 hours than he had in the past week so that
seemed good too.
Of course now Jake has a fever. Been 102.5-104 for the last
2days! They said at Drs it's viral😞
5/17
the penrose came out, then next diaper change I
noticed the next suture had pulled away from one side also. (Guessing the
penrose had been rubbing against that suture)
Dr Butlers first plan had been only to suture the lower
section anyways, so now it's down to that. I'm still cleaning with Hibiclens
each diaper change and still able to get saline into the wound also. And now
applying silvadene onto the open part of wound.
May 20
I just emailed pictures and talked to them on the phone.
(The dr is in Korea) it looks ok though, not infected. The pic from today looks
really good. It actually is still open up top when he moves around. But I've
been putting a steri strip on it and taping his little cheeks together so it
doesn't pull open all the time.
And the second picture is his first time looking in the
mirror during tummy time/air drying the buns!
May 23rd. You can see how the upper two sutures came out and the ulcer/sores that started from it. His poor buns have a hard time healing. The bigger ulcer is closing up slowly though.
5/30
Everything looks ok. Saw both surgeons on Thursday and its a
go for Monday 8am surgery. Sutures are still in and they might remove them
during surgery (hopefully!) can't wait to be done and fully on the mend!!
this wrap was awesome so no pressure would be on Benjamin's buns. We have a lot of baseball games to watch and I didn't want him in his car seat with pressure on his buns or if I hold him I didn't want to be resting my arm under the weight of his buns!! LOVE IT - got it on Amazon and it was NOT the most expensive, but it's super soft and flexible. East to wrap!! CUDDLE BUG!!
Here's the link... http://www.amazon.com/CuddleBug-Carrier-Postpartum-Nursing-Shower/dp/B00OJVNSFA/ref=sr_1_4_s_it?s=baby-products&ie=UTF8&qid=1459879220&sr=1-4&keywords=baby+wrap
Mon 6/1 Tethered spinal cord surgery...to remove the lipoma.
Surgery went ok. He seems to be in a lot of pain. But
definitely more comfortable in my arms😀 he's supposed to be
lying flat til tomorrow or Wed. But I have him flat on a pillow in my lap and
he's much better. Still very drugged, but he nursed. I haven't seen how it
looks yet but I think the incision is bigger than she thought it would be. I hadn't realized it at the time, but the doctor kept asking how often he pees/poops, but the 1-2 weeks before his first surgery, I thought it was odd that I could nurse Ben throughout the night, but he would wake up with a dry diaper. As soon as his surgery was done, he had full diapers every night. So I would have thought that Ben wasn't showing any signs/symptoms of his cord being tethered, but realized later this was a sign...
She
gave me a picture of what she removed.
June 6/1
They just gave him more pain meds. He's pretty
uncomfortable. His throat sounds pretty good, didn't need a treatment this
time. He does have a catheter in too.... And seems to hate it! Still diapering
is awful. Already went up his back into the dressing she put on. They have no
orders for its care... So I seriously took over and used my hibiclense to clean
it off, then my own Telfa (since they don't have it either) and Bactroban to
make a 'mud flap' to keep the poo away. I put the bactroban and/or silvadene on his buns, then put telfa folded a little into his crack so no poop leaks upwards, then I take a 'sensitive skin' tape and tape his buns over the Telfa cheek to cheek to make the 'mud-flap' so hopefully the poop stays below and nothing gets up onto his sutures. Have to keep it clean so nothing leaks into his spine!
Going to be a big scar. Giving him good pain meds too.
6/2
Still at the hospital. Dr Wehby wanted him here at least til
tomorrow. For how young he is and she said it was a lot for him to go thru. She
wanted more IV pain meds so he could rest and heal.
https://www.youtube.com/watch?v=HZCYrZSLGTw&feature=youtu.be
https://www.youtube.com/watch?v=OG-MFmj6vqc&feature=youtu.be
Tamaras comment on video
Oh.my.goodness that is the sweetest thing ever - we just
watched it 3 times and my smile muscles hurt - it's Christmas time and can you
not believe it... He has a great little singing voice and I love that it ends
with a kiss and Benjamin was paying such good attention... Treasure that Holly!
😀 I actually played it
to Benjamin tonight to calm him while we were giving him meds and he totally
stared at my phone. Brotherly love!!!
Tamara, do you remember if Taylor and Dusty had sutures or
glue to hold their incision together? She only did glue (the lines in the
picture are pen markings) after the last surgery, it makes me sick to think of
this one opening up to his spine, but I have to believe this is how she closes
them all? It's holding good so far. She wants it all open to air, but I did buy
tegaderm just in case I need it. (She had tegaderm on it right after surgery
but poop got on it a little so Jenny took it off.
Reply
Taylor and Dustin did not have any sutures at surface either
- I really don't think it will open up. I understand your fear though
after the last experience... So much more challenging to care for with an
infant in diapers that poops with every feeding... I don't remember a lot
of the care part afterwards.
6/10/15
Here's how it looks today and a couple days ago.... I had
glue added on Monday, but it only stayed on the good skin! It's gaping a tiny
bit... Ugh!
Tamara:Yeah I can see that little gape at the base of the
incision - just has such a hard time on the skin with the hemangioma - I would
try to get him in again to Dr Wehby - keep it clean like you are doing and I
would imagine that there are layers of sutures below the surface holding it
together but that needs to be dealt with ASAP.
Cristi:
Yikes holly. Can you steri strip that opening closed?
Yes I've tried and I can do it again... Only problem, I make
the 'mud flap' to keep the poop off it (she warned me plenty that if poop gets down to his spine he could get a meningitis infection) but if it gets thru to the steri strips
then when I take them off it pulls on it more... Which makes it just as
bad/worse!!
I emailed the picture to her office to see what she thinks.
6/11
Saw Dr. Wehby
Added a few layers of glue. She said it was superficial so
it had healed deeper. (I had his pediatrician add glue last Monday and it wore
off in less than 2 days) we'll see how it does this time....
Tamara :
She should have given you a tube of it to take home so you
can treat it at home if it opens up again! This has been such a hassle
for you and doctors don't realize the inconvenience of driving from Boring to
downtown and being stressed and worried about infection and pain and other
complications - kind of frustrating how she just acts like its no big
thing...
I took one tube of glue home and had to use it today (they
say the glue holds for days... Not on his skin tho!) and I got another tube of
it at the clinic I used to work at... So hopefully I can get thru the weekend!!
6/13
I could listen to him all day! I love it :)
Just watched this video (copied the link) I was seriously
laughing out loud! You'll laugh too! Especially about the breast feeding
cover-ups and 'only dairy-free boobs should be shown in public'!! Too
funny!
June 16th follow up appointment....being a brave little guy laying on the examining table!
7/8
Yes!!! It looks great! There is still 2 sutures sticking out
so that's a spot that infection could get in, but otherwise good! And where the
hemangioma was there isn't even a scar, kinda crazy after all we went thru!!
7/10
Text to Tamara, I'm attaching a picture of what I'm thinking this
would be the type of tethered cord Benjamin and your kids had...? The second
paragraph(tethered cord syndrome?) Meaning easy surgical fix with no problem?
I'm wondering because the doctors never said the words 'spina bifida' but
another mom I know just said 'she is so thankful her baby has results from her
MRI and she does not have tethered cord but just a mild form of spina bifida'
but I was thinking spina bifida either came with more problems or was more
serious than having a tethered cord... Does this make sense?
Tamara:
Yes Taylor and Dustin had the tethered spinal cord syndrome
with very "thick and tight filum" that showed no movement with
heartbeat on the sine images of the MRI - I believe it is a very mild form of
spina bifida and the surgery is said to be "corrective" - the kids
both have tight lower extremities but it did fix toe walking and bladder/bowel
issues. Neither of them had any outward dimples or hair tufts that I am
aware of at birth...
My reply: That's kind of what I thought. Benjamin is doing great,
hopefully some day I won't worry about everything! Unlike my friends reaction
to her MRI, we felt relieved knowing it was a tethered cord and that it could
be corrected.
I can finally pack up almost all of these supplies!! I felt like a certified wound care nurse for the last 5 months!! It seemed like one treatment would work for awhile then I'd need to switch to something else. At the hospital, I was given a lot of supplies to 'dust and crust' it's the blue bottles that you spray on the ulcer first to wet it down, then sprinkle the dust and it will 'crust' over like a scab. it would seal the sore to help it heal. had to do this a few times a day. Not easy with baby poop too. This was mainly the treatment for the ulcer wound. Honest Company has an organic healing balm...this worked great too! To keep the ulcer covered in a balm, kept it from rubbing on his diaper and helped it to heal and not bleed.
As parents, we can celebrate all the little things, all the accomplishments our children go thru! With Benjamin, it all just feels even more special knowing that he is ok!! When we first heard his diagnosis, we didn't know what the outcome would be, or how severe his mass was.... so thankful that our little guy can walk and doesn't have any complications.
He is such a joy in our family! I LOVE watching his big brothers play with him! So far, it looks like he is going to love sports as much as his brothers. He started out with the video above where he melts down if he can't shoot baskets. Now, as I write this, he is 12 1/2 months and can walk around. Any ball he finds he walks (a little like 'frankenstein' still the way he stomps and falls a lot) to the hoop to make baskets...over and over again!
February 2016... Ben just started walking!! Doing great!
HAPPY BIRTHDAY BENJAMIN!!
Not too bad!! His birth mark is lightening up, only issue is there is a thicker hemangioma at the base of his strawberry birthmark (hidden between his little 'cheeks' that still bleeds a little and could cause issues later. 
God definitely gave us this sweet baby!! He lights up our whole family!! 
Follow up apt with Dr Wehby 3/31/16 ALL GOOD!! Cleared for 6 more months. At some point in the next year, Benjamin will probably have another bladder ultra sound to make sure his bladder is emptying properly. And we are to watch for signs of his cord being tethered back up, which would be difficulty walking, back pain, or any problems with bladder or constipation. So thankful for such an amazing neurosurgeon, she told us she's the best and Benjamin was in great hands with her.
UPDATE 2/6/17
if I had only known about Young Living Rose Ointment!!! I started with another essential oil combination I labeled "dry skin" and it was working good too. (my friends had great success with it on her dry/sore hands. Ben is holding the rose ointment in the picture. It is amazing on any skin condition, but Ben sees the container and says "buns". His buns had been healing up ok, but still kept getting dry sores and bumps. This is the same container I bought in August! So with my wholesale discount it is only $22! And it has lasted months!
1 oz roller bottle 10 drops Bergamont
10 drops Lavender
10 drops Tea Tree
fill the rest with fractionated coconut oil.
Same combo of oils 10 drops each, but then I wanted this one to be more of a lotion so I melted about 1/4 cup coconut oil and 1/4 cup beeswax mixed together. Then added some of the cocoa butter lotion and mixed.
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