Research queen removed from her throne

***BREAKING NEWS***

The Lord God Almighty has removed the research queen from her throne. No one has been chosen to take her crown. 

Normally I would call myself the research queen. Before I buy something I will surf the net to find every review ever written on the product. Not only do I read all the reviews, but I usually read the bad ones first. I want to know why someone didn't like this product. You see, I figure if I can accept the very worst faults in a product then I can consider buying it. Next, I post on social media asking for references, "hey mom friends, ever use this or that" "ever eat at this place or that place". Finally, I talk to my closest friends and family members about my decision (usually by this point I've already made up my mind, I just need more reassurance that I'm right). 

Well here we are faced with this giant of a surgery and God has told me not to research. I mean, of course I did the basic research to fully understand what the surgery is, recovery and all that. What God told me was, "don't worry, I've got this". I didn't understand at first, I know God's got this, but he needs me to map out the perfect plan right?!? Who knows how to better care for a child than it's mother? So I prayed and waited. I waited to research anything. I waited until God told me it was ok. He is trying to show me that the reason I do so much research is because I need to be in control so I don't get bamboozled. That's really what it comes down to. I'm afraid that if I don't find the right doctor to do this surgery, and something goes wrong, it's my fault. I can't be liable for that!!! As it turns out, I'm not liable. With my husband we've prayed for God's direction, He directed us, and now we just have to have faith and trust that God has got this. So I'm very pleased to announce that I have been dethroned and I humbly bow down at the feet of my Abba Father. 

We are not promised tomorrow

The surgery Rebecca will have is a spinal fusion and rods. Basically they will put rods on either side if her spine and they are screwed into her spine. (I will not post pictures as this may be disturbing for some people to see but you can google if you're curious) once the rods are in place they will fuse the spine to be straight. The doctor is hopeful that he will only have to fuse the top curve but he may need to fuse the bottom curve too. He won't know until she has her ct scan in a few weeks. This will greatly reduce her flexibility if he needs to fuse both. Her surgery is schedule for July 16th at All Children's hospital in st Pete.

As you can imagine, it's been a count down since the day we scheduled the surgery. Rebecca will have a very long recovery which could take over a year, so we are trying to do as many things as posible with her before July 16th. We are seizing the day! We are not promised tomorrow so we are focusing on today. Needless to say my house may be messy for a while and my laundry may get piled high because those are just not our priorities right now. 

One thing I also must make very clear on this matter, we do not have a spirit of fear. Rebecca has always belonged to God first and we know He loves her more than we could imagine. We have complete faith that God is in control and we know that no matter what curve ball life throws us, God's there to catch it. 

How do you stop time?

The long awaited and unavoidable doctors appointment was finally here. Earlier that day we were at a friend's house doing some end of the year American Herirage Girl stuff. I remember looking at the clock the whole time, praying and hoping time would stop so we didn't have to go. Maybe the doctor's office would call and say that the doctor had an emergency and needed to reschedule. At one point my friend said "aren't you going to be late"? That was my clue that the rapture wasn't going to happen and I was going to have to take rebecca. So I went...reluctantly...but I went. I knew what he was going to say, but I tried to convince myself that maybe it wasn't as bad as I thought. 

So as usual, the first thing they do is take x-rays of Rebecca's back. Then we sat and waited for the doctor to come in. For the past three years Rebecca's curves have stayed pretty much the same. Her top curve around 36 degrees and lower curve around 32 degrees. The doctor has told us for years that if her curves reached over 40 degrees that we would need to operate. Moments later When dr neustadt came in, he informed us that Rebecca's top curve had significantly progressed. It is now 60 degrees and the lower curve is 42 degrees. My heart sank. I looked at rebecca, she looked devistated. Remember how earlier I wanted time to stop, well it did. We have prepared ourselves and rebecca for this day but it didn't matter now. It's here and it's real. 

One out of ten

I've been trying to stay in order of events while catching you up on the past 12 years. But I felt the need to speak to the title of this blog, "one out of ten".

Once we decided to move forward with Dr Q's plan in doing the experimental procedure, he explained in full to us his mission and where we fit in. The state had approved funding for Dr Q to do 10 of his experimental procedures, and they were all to be completed within a year. Rebecca was to be baby #7 and baby #6 was a baby from across the country that had traveled all the way to FL to receive treatment. Up until now, the first 5 babies did not make it. One baby had survived the procedure and survived delivery but later died at 6 months old. Baby #6 was due in June and rebecca was due July. #6 survived the surgery and Dr Q was very hopeful that the baby would be his first true success. Sometimes The Lord giveth and sometimes The Lord taketh away. Unfortunately baby #6 didn't spend time here on earth, and is now with it's abba father. 

"I have not given you a spirit of fear..." 

Finding out about baby #6 was scary, but we knew that no matter what happened God was in control. We clung to our faith and As you know now, rebecca is alive and our miracle! 

Baby #8, #9 and #10 did not survive. 

Rebecca is the only 1 out of 10 babies alive today. 

Mom's intuition

Since the time rebecca was diagnosed with scoliosis up until her last x-Ray in 2012, Rebecca's curves have stayed about the same. The dr has told us for years that if her curves progressed over 40 degrees we would have to consider having the spinal fusion. 

August 2013

I'm 8 months pregnant and trying to not spend any money because we have a baby coming. Of course right when you try to save something always comes up. I remember it was a Sunday, church was starting in 15 min and rebecca still wasn't dressed. Everything she put on didn't fit, we were both getting frustrated so I said "put on this dress and we will buy clothes after church". Rebecca had gone through a major growth spurt. So we had to go buy new clothes. While trying clothes on, they were fitting funny, mostly the shirts. Call it a mom's intuition or whatever you want but at that moment I knew it was not good. 

I didn't speak about it to anyone. Not even josh, and we usually talk about everything! I didn't want it to be real so I ignored it. I chose to focus on everything but Rebecca's scoliosis, mostly on our new baby Leah, homeschooling, AHG, the holidays and pretty much anything that would distract me....even Facebook. We were supposed to go for Rebecca's next follow up in January, so in December I reapplied for Medicaid for Rebecca because I was afraid of what the dr would say (she had Medicaid as a secondary insurance for the first 3 years of her life because of all of her medical expenses). Well it took forever to get approved because I kept sending in the wrong stuff. I mean seriously, I'm college educated but I couldn't figure out the Medicaid system. She didn't get approved until April so we waited that whole time to make the apt (at least that was my excuse). 

The Brace

after I researched and spoke to several people about who we should go to, to receive treatment for Rebecca's scoliosis, we ended up with Dr. Neustadt. He explained that she has an "S" curve and that we will attempt to brace Rebecca to keep the curves from worsening. So he prescribed a Boston brace to be worn 22 hours a day.

FYI - scoliosis brace is like a torture device, created to help your child but it really just makes them miserable and it only works 50% of the time.

So remember how I told you Rebecca had projectile vomiting as a baby. Well guess who's back! You guessed it, our arch enemy reflux has returned due to the brace. I explained to the doctor that Rebecca can not wear the brace for 22 hours because she's throwing up everything she eats. He chuckled and said, "most moms have a hard time listening to their children complain about the discomfort of the brace." (I hate when doctors say the words discomfort. No it's actual pain). I explained to him Rebecca's entire history of her CDH and reflux and everything. He didn't believe me and told me to continue. (To this day I don't blame him for not understanding her circumstances, after all she is a miracle. Most CDH babies at this time died at birth so doctors do not understand how to treat these patients.)

Well I have never liked the word no, so I took Rebecca to her GI doctor. She verified that Rebecca could definitely be experiencing reflux because of her brace due to her history and anatomy. She ordered an endoscopy to look and make sure it wasn't anything more serious than reflux. It ended up being a serious case of reflux. Rebecca's esophagus was so raw and torn up from the acid she'd been throwing up. So I went back to Dr. N with this info and said "told you so!" Just kidding I'm not that mom. But I informed him of the GI doctor's new discovery. So he ordered her a different brace that she was to sleep in.

So we used the new one as much as we could until she grew out of it.

When it was time to get a new brace Rebecca asked to go back to the Boston brace but to be worn less than the 22 hours. So we had that brace through last year.

Thanks for traumatizing my kid!

So we went to our first apt for Rebecca's scoliosis (the doctor will remain unnamed) and I didn't know what to expect. We had to fill out all the new patient info papers and have all of Rebecca's past x-rays pull up in their computer system. It was taking a while for them to pull up so they left us alone in the patient room to wait, with the computer in the room! So I looked! I'm mean what mom wouldn't look at her kids medical records, after all they were mine!

I could not believe what I saw. Over a two year period on every chest x-ray it said "scoliosis". They had diagnosed her with scoliosis two years ago and never told us! I was steaming, but I kept it together and didn't let on that I knew when the doctor came in to discuss Rebecca.

The doctor came in and said, "she has juvenile idiopathic scoliosis. We have a couple of options. first we will try a brace with her, but if that doesn't work we will have to do surgery on her back. It's very invasive. We will cut her open and put rods and hooks in her back to keep her spine straight." At this point now I'm beyond steaming that he is saying all of this in front of my 6 year old. Long story short, we didn't see that doctor again. Rebecca cried for years about having to get "hooks" in her back. Ugh! Thanks for traumatizing my kid!

The rides not over yet

Things started getting normal again. I was able to get a part time job, start back up with my classes and for Rebecca's 2nd birthday we took her to Disney for the first time!

And she got sick...really sick. But we figured she just picked up a weird bug at Disney. 

One time we took her to chuck e cheese and she got sick....really sick...like pneumonia sick. 

Skip forward a bit...September 17, 2005 josh and I finally got married! We went to Hawaii for our honeymoon and rebecca went to Disney with my parents.

 

She got sick again...really sick again

Now we are realizing her immune system must still be compromised. So we limited her visits to places where sick kids may be. 

In 2008 she got sick again. This time she was so dehydrated she ended up staying in the hospital for 5 days. The doctors had given her antibiotics and she wasn't getting better. So they started doing all sorts of tests to try and figure it out. After her chest X-ray the nurse said, "nothing showed up besides the scoliosis". 

Wait what?!? What scoliosis? The nurse then said "oh you didn't know about that"?

How is it that we've had 10+ chest X-rays over the past several years and they never told us about her scoliosis?

So once she was released from the hospital we made an apt with a pediatric orthopedic doctor. 

I felt like the roller coaster was almost over, but as we approached the platform someone came over the loud speaker and said "The ride's not over, stay seated, don't take your seatbelt off, keep your arms and legs inside the car. We're going around again"

And God said let there be light!

It was Thanksgiving 2003. Rebecca was 1 1/2 and we were at papa and Mimi's house to eat. Rebecca always sat at the table with us, but always refused to eat. This day was different though, Mimi fixed a plate for her and encouraged her to eat it. And she did! Not a lot but SHE ATE!!! I couldn't believe it. I'm finally seeing the light at the end of this wind tunnel we had been in. In the next few months she ate more and more and in March of 2004 we finally had Rebecca's g-tube removed. 

Rebecca continued to have reflux issues and "picky eating" problems...but she was eating!

The first year was hard!

Having a new baby is hard! Throw in therapy 3 x a week, constant doctor apt, feeding tubes, postnatal hormones and being a new mom, The cards were stacked against us. If I had sought secular council I'm sure they would've told us that josh and I wouldn't make it out of this together. But thankfully We were both blessed with godly parents who prayed for us, encouraged us and cared about our little family. Not to mention all of our friends and extended family who never left our side. But it was hard! I cried....a lot! I would see mothers nursing their babies, I would cry. I saw mothers feeding their baby a bottle, I would cry. Rebecca would accidentally pull out her feeding tube and I had to reinsert it, then I would cry.

The therapist told me the entire first year to try and give  rebecca the bottle. She rejected it, daily, and I would cry. Rebecca was on 24 hour feeds. It meant projectile vomiting every 4-6 hours. She lived in her baby swing until she was over a year because laying her down made her vomit. (Side note: this is the beginning of her reflux story)

While most first time moms spend that first year bonding, we spent the first year surviving. Josh and I did struggle and understandably. He was at work all day wishing he wasn't. I was at home all day wishing I wasn't. I would love to say that we clung to each other and found strength in each other, but we were 22 and immature. So we just argued, a lot. Looking back I see how God gave us the strength not to give up. 

As Rebecca's first birthday came I wondered if rebecca would ever eat....

I thought that was the hard part

So I thought the hard part was over. It had been 5 days, she's alive, we've made it! Well not quite. Now a different doctor would do surgery on her at just 7 days old to try and put all of her organs back in place and repair the hernia. 6 hours and 1 blood transfusion later she was out of surgery and we could breath, but could she? The short answer was no, she would remain at 100% ventilation for several more weeks. Also she received a chest tube and an ng tube. Every day we would visit her, read books to her and sometimes just stare at her, we could not pick her up or even touch her. She was in a special room within the NICU (a quiet room separate from the other NICU babies).

week 4

They told us they were moving her back to St. Joseph's Women's NICU, to this day I have no idea why they moved her back. Once they brought her back, they told us that she had an infection from the hernia repair and they would have to go back in and try to re-repair the hernia.

So here's where another big miracle happened...

They originally repaired Rebecca's hernia with a piece of surgical mesh, which her body rejected and that's why she got the infection. Before the re-repair the doctor said, "I don't know what I'm going to do, there was no extra tissue from Rebecca's body to do the repair so that's why I used the mesh. We will have to see when I get in there. I know your family prays so now would be the time".

WHAT?! did that doctor just tell us to pray? ok we were going to do that anyway but now this sounds really serious. Hours later the doctor came out from surgery. He had a funny look on his face and I started to panic for a second...

"Your prayers worked!" He told us that when he went in to remove the mesh, he found a flap of skin that wasn't there before! How could this be? We all knew at that moment that God had big plans for Rebecca!

She stayed about one more month in the hospital and then was released. Sent home with an apnea monitor and a feeding tube.

B-DAY

July 29, 2002

I remember it like it were yesterday. I had a scheduled C-section at St. Joe Women's where they would put me under so they could have a completely controlled situation. They wheeled me into the surgery room where there were 20+ doctors there and several nurses. For a moment I felt like a science experiment, they were talking about "the case" with no regard for my personal attachment to this precious child that God knit inside me. For a split second I wanted to scream out "I'm not doing this" but I didn't. Instead I inhaled the gas that sent me into a deep sleep....

beep....beep....beep...

"Deborah wake up, they are going to let you see her before they take her to TGH". Josh and the nurse were trying to wake me up early in recovery. They wanted to get Rebecca over to Tampa General because at that time they were the only hospital in Tampa that had an ECMO machine. They literally wheeled my hospital bed into the NICU where I could barely turn my head enough to see her hooked up to every machine in the room (or so it seemed)

Then they took me away, I wouldn't see her for 4 more days.

And then....

The day after I was delivered this devastating news, Josh and I opened the envelope together....IT'S A GIRL! We were ecstatic but a cloud loomed over our heads. Immediately we contacted this doctor doing the CDH research.

CDH (congenital diaphragmatic hernia) - click here to more fully understand

Dr. Quienterro wanted to see us right away, within that week we had an appointment. He explained that he was doing an experimental procedure on babies diagnosed in the womb with CDH. The state was funding 10 procedures, 7 have already done and none of the babies had survived. We would be #8 if we qualified for the procedure, this included doing an amnio to determine that this was not as a result of genetics. So we did the test, came back negative and we were in!

At this time we were surrounded with so many supportive family members and friends who were encouraging us and praying for our Rebecca. Without this support from many of you, I may have given up hope but Josh reminded me that everyone else has faith in God and we too need to keep having faith.

May 2002

at 7 months pregnant Dr. Q did the experimental procedure (click here, this is not him but it's a similar procedure). She survived the surgery, now we wait.....and wait.....and pray....and pray....and wait

In the beginning

So I'm going backwards through our journey with Rebecca, in order to catch you up if you didn't know us when she was born or if you didn't really understand what happened with Rebecca.

March 2002 - 5 months pregnant

What an exciting day, we will find out the sex of our baby! As I lay on the table with a smile on my face, the ultrasound tech happily shows me "there's the heart, see it's beating, ooooh look at the nose so cute, two arms, two legs, oh good her head measures perfectly......" then she stopped.

silence for what seemed like 10 min but I'm sure it was only 30 seconds or so....

I asked her if everything was ok...no response...and then she says "let me get the doctor" and rushed out of the room.

In comes the doctor (not my doctor, just a doctor at the place I was having the ultrasound) he starts scanning me for about 5 min without saying anything to me. I remember repeating over and over "is everything ok?" "what's wrong" "Is something wrong"?

"Your baby has what is called Congenital Diaphragmatic Hernia. These babies don't live. It will die. It will either die inside of you or after it's born. You should consider an abortion at this time"

My head is spinning, what's a diaphragm whatchamacallit? Wait did he just say abortion? The baby CAN die or WILL die what did he say? So I asked him if the baby could survive and he said that if it did, it would end up brain damaged and I'm way too young to deal with the stress of a child like that (I was 21, I can't help now but think about Mary being a teenager when she had Jesus IN A STABLE!). So then I told him I didn't believe in abortion and that I would not be doing that. He assured me that I would change my mind, and even though it wasn't legal I could have an abortion up to 39 weeks and he had a place I could go to. I again told him I would not be having an abortion. He then gave me a phone number to call for a doctor who has been doing research in the area and he may be able to help me and he left the room.

The nurse asked if I wanted to know the gender. I did but I asked her to put it in an envelope so Josh and I could read together when he got home from work.

I don't remember driving home that day....

Later, many years later, I’ve reflected on that moment when I was alone in an unfamiliar doctors office with an unfamiliar doctor, an unfamiliar nurse, and a boatload of medical jargon that I did not understand. I truly feel that doctor thought he had my best interest. He thought somehow God had given him the power to speak into the life of me and my unborn child. He tried to reason with me, helping me to understand why abortion was the best decision for everyone involve. But in the moment what none of us realized was that we weren’t alone. God was there, blocking me from comprehending the doctors reasoning, and allowing that doctor to tell me about Dr Q’s experimental procedure.