The past 2 years of mommy life have been amazing and challenging at the same time. It started with my brother passing away from brain cancer 4 weeks after
finding out I was pregnant. Then Keira was born with a lot of health
issues. We have been spending a lot of time at doctor offices and
hospitals. She has had 4 surgeries so far. So
sending out newsletters, working and doing all the events I have done
in the past has been on hold. All I have wanted to do is spend time
with my baby and keep her as happy... and I
feel like I have accomplished that so far. She is the happiest and
sweetest thing. She is amazing at how well she had tolerated everything
she goes through and it does not seem to faze her at all. It
definitely affects me substantially more, but her happy loving spirit
make it all not seem so bad. And now I am finally updating on what had been going on and how we have managed her issues, conventionally and alternatively. I know deep down that She is why my life's path took me in the directions of doing what I do for a living. If
it wasn’t for my knowledge of alternative health and preventive
protocols, I think this poor child would be in a completely different life situation in life.
Considering
my past pregnancies only ever lasted 7 weeks, Keira was a surprise
pregnancy and she was born on her due date. We had an easy natural
water birth at St.Joe’s. Overall Keira seemed ok when born, but there were some red flags..., she had what they called "dimples" down by the tail bone and she
was missing a bone and toe on the right foot. The next morning her
oxygen was a bit low so they took her back, put her on oxygen and did a
chest x-ray to make sure there was not fluid in her lungs...protocol since she was a water birth. Lungs were fine but they saw an area of her colon that took up her entire
abdomen. In trying to figure out what was causing the dilated area of
colon, at 4 days old we were eventually transferred to University of Maryland
Medical Center in Baltimore. Through numerous imaging and scans, finally an MRI
revealed a tumor at the base of her spine called a sacrococcygeal
teratoma. These tumors can cause irregular development of the colon,
urinary track system, spine, legs, feet... so a lot was starting to make sense as far as the issues discovered...at least at that point. She was too small to remove the tumor yet and the immediate
concern was the enlarged area of colon and concern of it rupturing.
They took x-rays before and after she would eat to see what it was doing
and if it was getting smaller with time, but it was not. So
after 2 1/2 weeks in the NICU, they decided to do surgery on the colon. It
turned out that her colon had done a hairpin loop and had fused
together. It was causing a kink at the top and narrow at the bottom. My surgeon showed me the pictures, she said she had never seen anything like it. Keira ended up with a colostomy so they could let that stretched out area
of colon try to heal, so they could figure out what was normal colon
and what was not. The other section seemed very narrow and they
were not sure if it was just due to being below the kinked area and not
getting used properly. We finally went home at almost 4 weeks with a
newborn and a colostomy.
We
were home but the laundry list of Dr appointments started. Her tumor
removal was scheduled for 3 months old. In the mean time I also had to
meet with a neurosurgeon. Keira had a full body and brain MRI which is
protocol when there are tumors located on the spine anywhere. Plus, the neurosurgeon was going to have to be present during the tumor removal since it was located very close to the meningeal sac, a bundle of nerves at the base of the spine. If that got nicked it could cause spinal fluid to leak.
In those 1st
3 months we also met with: Our pediatric surgeon, our Pediatrician, and
Orthopedist, Genetics, Endocrinologist, Urologist, and an Ophthalmologist for the spots on her optic nerves in her eyes (which I am sure so many people have which are never noticed, but since they went over every inch of this child while in the NICU...).
At
3 months we went in for the surgery to remove the tumor. Fortunately,
it was benign. But after pathology examined it, there was question if
it was all removed. So
we had to wait another 3 months post-surgery before doing another MRI
to determine if there was any tumor left...scar tissue from surgery they
said will skew the MRI imaging. However, 1 week after the surgery she
got a really bad urinary track infection. She was so miserable and I notice her urine smelled strong. Luckily I do urinalysis with my clients and I got a urine sample from her. Sure
enough she had a UTI, so I took her to the pediatrician which they
confirmed the UTI. They figured it was due to being catheterized during
surgery. As soon as I discovered it, I started her in herbs safe for
infants, so I gave her some of that in her bottle and I could tell she
was feeling better quickly. I also made some Reishi
Mushroom tea and gave her some of that. She was back to a happy baby
quickly and her urine samples looked good. I held off on the anti-biotic for a
few days, but the white blood cell count in the urine was still showing
up. So
I put her on the anti-biotic to be on the safe side, but the white
blood cell count never changed. As soon as she came off the
anti-biotic, the uti
started coming back after 3 days. I put her back on the herbs and then
she was fine again. I kept telling my pediatrician and surgeon about
it. They kept saying as long as she is symptom free, they were not
concerned. I kept trying to explain that if I took her off the herbs she would start to get the UTI back. For the longest time no one got it. So
I just kept giving her the herbs since it was working and I didn’t want
her to get a UTI...or even worse a kidney infection. I rotated D-Mannos, Reishi Tea and Cornsilk tea.
At 4months my pediatrician understood what I was doing with the uti
prevention and recommended I go see the Urologist to rule out Kidney Reflux, where urine goes backwards up into the Kidneys. I met with the Urologist and
they sent us for a VCUG, where they inject dye into the bladder to see
where the urine is going. Turned out urine was going back up into the
kidneys. Kidney Reflux is when the valves that go from the kidneys
into the bladder do not close properly allowing urine to go back up into
the kidneys. Some kids are born with it and outgrow it, others have to
have surgery to fix the problem. The protocol is to use a low dose
anti-biotic to prevent infections until the problem resolves itself or
surgery needs to be done. They
usually wait a few years to see what happens with the reflux. Kidney
reflux is graded on a 1-5 scale, 1 being mild and 5 being severe. Keira
was a 1 on the right side and a 3 on the left. The urologist
recommended a procedure called Deflux where they inject a gel into the valve area to prevent reflux. Its
is only 70% effective and the more I looked into it I was finding that
many hospitals such as Nationwide Childrens hospital, Hopkins and places
like that have stopped doing Deflux, and in the wrong situation, it could cause more problems. So glad I wasn’t feeling it for that approach. I consulted with 2 other Urologists and decided to switch Urologists. I also didn’t end up doing the anti-biotic yet because the herbs I was
using were working to keep her infection free, but I had the anit-biotics on hand.
I was able to do this until she was 16 months old. After the colostomy
reversal at 15 month I couldn’t keep the infections under control.
Finally at 6 months we had another MRI and sure enough there was still 1/3 of the tumor remaining. My pediatric surgeon
wanted to go back in for the remaining piece. We ended up in a
slightly heated debate about that for a while. If it was benign,
why put her through all that right now. She kept saying it had a 15%
chance of turning malignant, but from what we read, researched and
consulted with other surgeons, her tumor had less that ¼% of ever turning malignant and 5% chance of growing back. But either way everyone's mindset was to remove the rest of the tumor. My surgeon said we didn’t need to rush into it,
but she wouldn’t reverse the colostomy until the tumor was removed due
to the location of the tumor surgery site being at the base of the tail
bone and poop in diapers often prevents the site from healing or ends up
infected. Sometimes kids end up with a colostomy so that the tumor
removal site can heal.
We
fought going back in for surgery for the rest of the tumor until she
was 11 months. We wanted her to get bigger and enjoy being a baby, she
had already had 2 surgeries and was still very small. Plus
they said the surgery was going to be tricky because they believed the
remaining piece of tumor looked just like tissue which is why they
missed it the first
time. Usually these tumors had defined margins, but hers had grown
into the surrounding tissue. Teratomas are made up of differ body
organs, tissues, hair, etc. SO they would have to take pieces of tissue and send it to pathology to see if it was tissue of tumor, and were not sure if they would find it or even be able to remove it all, which is why we were reluctant to let them go back in after it. And sure enough It was a long stressful 5 hour
surgery. After 3 hours they updated us that they were still looking. I
don’t know if I have ever been so mad. There was also again the
concern of the nerves at the base of the spine with these surgeries and
she was still tiny for 11 months. My conversations with my surgeon were
of the nerves, putting her though the surgery and not finding or
getting the rest of the tumor...the risks didn’t make sense to me. She brought in her partner to assist and
eventually did find the rest of it. It was a bunch of cysts behind the
tailbone. They removed some, the rest burst and disintegrated as they
tried to remove it. To this day I still don’t know that the surgery was necessary, it sounded like the tumor was dissolving.
Anyway
that was over. We had some issues with the healing process because
Keira at 11 months was determined to walk, and having an incision at the
right at the spot where she would fall on her butt was not ideal. Her
body was also rejecting some of the internal stitches which didn’t help. SO
instead of 2-3 weeks, she was finally healed up 10 weeks later. We then began planning for the colostomy reversal. However
in the mean time she had been walking for almost 2 months. She was now
13 months and was dragging her right foot some when walking. I took
her back to the orthopedist to check in. He thought I was being a little ridiculous for coming back so
soon...he wanted me to wait until she had been walking 6 months, but to me something seemed off about the way she walked. So
he took x-rays of her legs to see if they were the same length. To his
surprise, he saw the extremely large wedge type vertebrae of L5 in her
lower back. L5 looks like a triangle with 1 spines process on one side and 2 on the other. This is what was causing her waking to be off. Turned
out this is noted on her MRI she had done when she was 2 days old, but
she was so tiny it was noted as lower lumbar spinal anomalies. He
sent me to an orthopedic spine surgeon to consult. Now I'm terrified she was going to need spine surgery. But to my surprise, she said since did
not want to touch it and we would just follow her progress. Since she
is developing so well and it doesn’t seem to bother her, we are leaving
it alone. She may grow and adapt fine with it, or we will know if it
becomes a problem. That was a relief to know she was not going to need another surgery, at least not at this point. And her walking now at 2yrs
is straight and no more hitch🙂
Finally last April
2018, at 15 months old, Keira had the colostomy reversed. She did
great. They did end up having to remove part of the colon. The part that had been enlarged was the normal colon and the other part was narrow and abnormal, but they
said she had a longer colon than usual, so it's probably the right
length now. The recovery in the hospital was not fun for the first few days. The had to feed her through IV and she had tubs going
through her nose into her stomach to remove the gastric fluids while the colon was healing. So I couldn’t really pick her up for a few days and that’s all she wanted me to do. I was practically laying
in the hospital crib bed with her. Side note, she has never gotten back
in her back since that surgery, to her it was like a prison...not that
we used the crib much anyway.
Overall
she recovered well and we got an early discharge since she tolerated
liquids and eventually solids well and everything seemed to be
functioning fine with the reversal. Again
we ended up with some healing issues. After a week she started
abscessing at the internal layer of stiches where they closed her up
where the colostomy was. Eventually they had to open up the incision
and drain it, and then pack it to let it heal from the inside out. However it healed over with granular tissue so I had to cauterize it every day
and thankfully it did heal so that they didn't have to go remove the
tissue and try to sew it back up again. I was at the hospital 2x/week
for almost 10 weeks checking in with the surgeon an making sure we were
on the right track. The cauterizing worked and 11 weeks later she was
healed up! The whole time this child was such a good sport about all of this, my surgeon commented on it so many times that she couldn't believe how good Keira was being:)
Yey, that was over and we
were thinking we would be getting a break finally, unfortunately the
least expected and the most complicated issue arose. It wasn’t until
the colostomy reversal in April at 15 months old that she started
getting chronic UTI’s…. once she was pooping in a diaper. I had been
able to keep her her
off anti-biotics up until this point. But I couldn’t keep her
infection free and we finally started the low dose daily antibiotics
Memorial Day weekend. But she started getting
UTI’s even while on anti-biotics. This rose concern and our urologist
ordered another VCUG to re-evaluate the reflux,which was done this past
October. The results were that her reflux has gotten worse, its
now a grade 4 out of 5 on both sides. My Urologist said there is
always a chance of nerve damage to the bladder when removing the type of
tumor Keira had, due to the tumors’ location on the spine. And Keira
had to have that to have that surgery done twice and each time she had a
tumor removal surgery, it resulted in chronic UTI’s that were getting
worse. But there is no way of knowing for sure if that was the cause, or
if this was going to be the case. When the reflux is not improving as the child gets older, the
protocol is to surgically repair the ureters that go from the bladder to
the kidneys. But before doing that we had to do a bladder pressure
test to see if she had a high-pressure bladder which is often the case if reflux gets worse. If there is a high-pressure bladder the surgery will most likely not be effective since pressure is forcing the urine back up regardless. However, to their surprise, she did does not have a high-pressure
bladder. They ordered another kidney and bladder ultrasound, they were
worried about some left kidney damage since the it was larger and has
had a higher grade
reflux, but her kidneys still looked good and healthy. This was assumed
to be due to the fact I was able to catch the UTI’s before the
infections would get to the kidneys. Since she has been 3 months old
I have been checking her urine with the dipsticks that I use for the
urinalysis I do with my clients...I am so grateful that had been part of
my practice for so long...it came in handy with my own child.
Now the
question was if her bladder is eliminating properly, which would be the neurological piece that she either had already, or was a result of tumor removal surgeries. We will never know, but her kidney ultra sounds at 2 days old and 5 months old all showed the enlarged left kidney. The VCUG, bladder
pressure tests and ultrasound done at 22 months old, all showed urine still remaining in her
bladder after voiding. So as of January, 3rd, 2019, I had to start catheterizing her 4 times a day...which she has again been a great sport about and it doesn't seem like a big deal to do. I almost had her potty trained a few times. Surgeries, anti-biotics, and urinary tract
infections make it a bit tough, but she has the concept since about 11 months. Our Urologist
said that even if she does not have complete neurological function of
the bladder, she can still learn to empty it consciously. I love this
guy, he even said to get her into yoga as she gets older, since he had
seen people control their body with their minds. Luckily we have already started yoga due to her spine. I also started her on some homeopathic remedies, and MonoLaurin which is just coconut oil extract, to help prevent UTI’s and in really seems to be helping.
This
is where we currently are with Keira, who remains happy and overall
healthy considering all the stuff she is going through. No one ever has
a clue when they see her out. We go to the rock climbing
gym and she is this tiny thing, still too small for the smallest
toddler harness, who is trying to climb out of our reach. Loves to “go
ride” on the horses and sleep with a pile of toy horses:)
For
someone who has been living a more alternative lifestyle most of my
life, it has been an experience spending this much time in the
conventional world. I must say I love all the Dr’s I am seeing at Univ
MD. I have used Hopkin’s for a few second opinions would not leave MD
unless I absolutely had to. Nationwide Children Hospital had been
involved with her colon issues at birth and we are also consulting with a
urologist at Columbia University. But our Urologist at MD has been
fantastic. My Pediatric surgeon, she has been on top of everything going on with Keira and
great at coordinating with the other doctors when more testing and
imaging is done so we get it all done at once since we are dealing with
different departments needed different tests and images. And my Pediatrician,
I would be lost without him… he too has been amazing, reaching out to
his other contacts for opinions on what to do with some of Keira’s
issues. Emergency medicine has always been something I have appreciated,
and even more so now.
