And now the hard part... waiting

I've been hesitant to post this because we are now to the point in our IVF journey where I fear anything I say out loud could potentially "jinx" us.  Of course, logically, I know this isn't how it works, but it is still scary nonetheless. 

Our retrieval on Wednesday went really well.  We left Lexington around 5am to get to the doctor's office by 7:45.  Once we were checked in, I changed into a paper robe and fuzzy socks and was taken to the room where they do the procedures... I wouldn't quite call it an operating room because it didn't have the bright lights and feel of a hospital.  The room was freezing though and I couldn't stop shivering until the anesthesia kicked in.

Hunter was doing his "job" in another room so he couldn't be there for the retrieval.  Within a minute or two of starting the anesthesia, I took a REALLY nice nap!  Gotta love anesthesia.  My doctor was on vacation unfortunately, but I had met the other doctor during one of the other tests I had done so I was at least familiar with him.

When they woke me up, I was a little loopy but not feeling too bad.  They took me to a different room to meet Hunter and relax while we waited to talk to a nurse.  I inhaled a bag of Cheese Its that they gave me and drank a bottle of water.  Luckily since the procedure was early, I wasn't feeling too hangry.

We were thrilled when we learned that they were able to get 5 eggs, since that's how many follicles we saw on our last ultrasound.  The nurse told us that we would hear from the embryologist the next day (Thursday) to confirm how many eggs were fertilized.

Leaving the doctor's office... no makeup and a little woozy from anesthesia!

After grabbing a quick bite to eat, we headed home to spend the rest of the day with Hunter's step mom and Sawyer.  We were so happy to hear that he had behaved really well for her all day.  He sure does love his "DeDe"!

On Thursday morning, Debbie and I dropped Sawyer off at preschool and decided to do a little shopping.  I figured staying busy was the best way to keep me from checking my phone every 2 seconds (nope...still looked at it non stop).  I may or may not have yelled at Hunter when he called me and got me all excited thinking it was the embryologist.  We were obviously both really nervous and excited to hear from them!!

Finally, the embryologist called.  He told me that out of the 5 eggs, 3 were mature enough to be fertilized, and all had fertilized.  I was really excited to hear this!  I know compared to many people, 3 doesn't sound like much, but I really just wanted to hear that more than 1 had made it.  We were all able to let out a big sigh of relief.

My doctor called me later that day and seemed excited about the results as well.  She said that unless all of the embryos were developing at the exact same rate, we would likely pick the best and do a transfer on Saturday. 

On Saturday morning, we all headed back to Mt. Pleasant (Debbie and Sawyer included this time) for the transfer.  It was a really quick procedure but was truly amazing to watch, as you can see the catheter placing the embryo in your uterus.  I still have a hard time believing that something so small can turn into a real person!

Everything is going really well so far, but I can't help but feel nervous and anxious.  We are praying so hard that this works.  Part of me is really excited.  I want to look at baby clothes and think of names and imagine Sawyer holding a little brother or sister.  But then another part of me fears that if I let myself get too excited, it will just be a longer fall if this doesn't work.

I have to remind myself constantly (like every minute of every day) that this is in God's hands.  No amount off worry can change the outcome and no amount of joy can jinx it.  We are so grateful for everyone who has been praying for us.  It seems that every time the anxiety starts to feel suffocating, someone reaches out with the perfect text or message or phone call, and I'm able to relax and let my guard down.

We should find out Tuesday if we have any embryos to freeze, and we are hopeful that we will!

Thank you so much again for all of the prayers and well wishes.  God is so good and we are so lucky to have such amazing people on our side during this journey.  If any one has any great ideas for passing the time (that don't include working out or drinking 😜), bible verses or quotes that have helped you through a time of waiting, or IVF success stories, send them my way!

Twas the night before retrieval

Tomorrow is the big day!  My ultrasound on Monday showed that I have 5 mature follicles.  Not quite as many as I had hoped for but it's one more than I had last week so I'll take it!  We are hoping and praying that one of those follicles holds an egg that will eventually become our baby!

I took my trigger shot on Monday night (and have a huge welt on my stomach to prove it) and am done with injections.  Woo hoo!

Apart from the anxiety, the hardest part of planning retrieval has been finding someone to watch Sawyer.  Our doctor's main office is two hours away, and we have to leave at 5am to be there in time for our appointment.  Hunter has to do his *part* at the same time they are doing my retrieval, so there was no way we could bring him with us.

The thought of him waking up to a babysitter he had never met had me in tears.  Luckily, we once again have the best family and friends EVER, and Hunter's step mom is flying here as we speak to watch Sawyer during our appointment and spend the weekend with us.  I am so eternally grateful!  Selfishly, I'm also really excited to have her here because after the retrieval there is more waiting, so it will be wonderful to have someone here to keep me distracted!

As long as they are able to retrieve my eggs tomorrow as planned, we will get a call on Thursday to confirm how many of the eggs were fertilized to become embryos.  Then we will wait another day or two to see how many embryos survive (some may not progress due to chromosomal abnormalities, etc.) As long as my estrogen levels and lining look good, we will move forward with a fresh (ie: not frozen) transfer on either Saturday or Monday.

If there are multiple embryos, and we pray there are, the embryos compete in a beauty pageant which includes a swimsuit competition and talent show.  Just kidding.  They fight it out Hunger Games style to see who will survive.  Or the embryologists looks at them to see which looks like it has the best chance of a viable pregnancy.  Something like that...

Anyway, despite my nerves and anxiety, I'm feeling really good about this whole process.  I trust that God will be with us and the doctor the entire time, as He has been throughout this journey.  We know that once we can hold a sweet newborn in our arms, all of this will have been more than worth it.

Thank you so much for your continued thoughts and prayers.  Each text, Facebook message, phone call, and conversation with those who are thinking about us or who have been on a similar journey has meant so much to us and given us a lot of piece of mind.

I keep thinking of a Bible verse that we focused on at VBS this year, Isaiah 43:2...
When you pass through the waters, I will be with you.; and when you pass through the rivers, they will not sweep over you.  When you walk through the fire, you will not be burned; the flames will not set you ablaze.

IVF: Weeks 1-2

Before I begin, thank you SO much to everyone who has reached out to us to offer prayers, positive vibes, and even shared similar experiences.  Infertility can feel so lonely but having such a great support system of family and friends, along with a deep faith that God will get us through this, has made this process more bearable.  So, from the bottom of our hearts, thank you so much.  You have no idea how your words and prayers have helped us through tough times.

Now, onto our IVF treatment.  For anyone reading this who may have gone/will go through IVF, it's important to know that every protocol is different depending on what health issues you or your spouse may have.  After 3 attempts at IUI, my doctor now knows that I am a slow responder to stimulation injections.  This is due to the fact that my ovaries have been very suppressed for, what they consider, a long time.

Many people start their IVF protocol with a month of birth control. My doctor decided to put me on estrogen pills for two weeks instead.  Since estrogen is something I take outside of fertility treatments as part of my hormone replacements, I FINALLY felt normal for two weeks!  I had almost forgotten what it felt like to not be taking hormone injections, so it was a nice reminder that, eventually, I am going to feel normal again! (ie:not crazy)

During those two weeks I also had to have a sonotrial transfer (I might be butchering that name).  Basically it was a mock transfer to make sure everything looked okay with my uterus and ovaries.  They only do this testing at certain times so I was lucky enough to have it scheduled right in the middle of Sawyer's nap time when Hunter was out of town. 🙄 

The doctor could have been taking my lady bits out and I wouldn't have noticed because I was so busy trying to calm Sawyer down.  He loves my nurses (because he sees them all the time!), but watching a new to us, male, doctor perform a procedure on his mama during nap time was enough to make him lose it!  He kept crying out "all done Mama, all done!"  It just broke my heart.  On a positive note, that procedure is known to be painful and I truly was so distracted that I felt nothing!

Everything looked great during the procedure so on the Friday before Labor Day weekend, I had my baseline ultrasound and blood work to see how many resting follicles I had, and check my estrogen levels.  My package of ridiculously expensive medicine arrived and I started my shots that Sunday.

Delivery day!  Those Gonal F Pens only lasted one week 😳

Week 1

Week one was, luckily, not too exciting.  I've been doing injections since February so that part was nothing new.  The doses were higher which caused them to be a bit more painful, but still very manageable.  As a reference for those interested, I took 50 units of HCG in the morning and 350 units of Gonal Fat night.

As expected, my estrogen levels were pretty low to start with.  I went in for an ultrasound on Wednesday, and then another on Saturday.  By Saturday, I had a couple of follicles that were starting to grow, so that was good news!

Big a$$ needle for Cetrotide (meds to prevent me from ovulating early)...seems a little excessive!

 Week 2

Week 2 was full of appointments, because they have to monitor you very closely during IVF.  I had an ultrasound on Monday, Wednesday, and Thursday.  I would have gone back in on Friday or Saturday but our offices were closed in anticipation of Hurricane Florence. (We have been lucky here in Lexington with just some rain and light wind- no major damage).

My estrogen level tends to jump very quickly once it starts rising, and it went from 6 at the beginning of week 1 to almost 700 by Thursday of week 2. 

While I was happy to see that things were progressing, I have to be honest and say that I am disappointed and worried about my follicle count. (The follicles are what release an egg.)  As of Friday I had 4 follicles that were maturing, and a few smaller ones that they are hoping will catch up.

A lot of what I have read about IVF talks about women having 20 or more follicles by the time they get to retrieval.  I knew I probably wouldn't have that many but I was really hoping for at least 10.  Usually only about have survive after fertilization, and even more tend to drop off before it is time for implantation.  That being said, quality is certainly more important than quality, because you could have a ton of poor quality eggs.  I still would love to have more than a few eggs though.

My doctor won't do a retrieval for any less than 4 eggs.  If I don't end up with enough mature follicles, we will likely have to switch this cycle to IUI and hope for the best.  We could try IVF again with a different protocol in hope that more follicles would mature, but there is no guarantee.  I should have more answers this week, as some follicles are likely nearing the size they need to be for retrieval. 

I'm really praying that more follicles have matured by my appointment tomorrow and would appreciate anyone reading this to pray for the same.  We have invested so much money and time, and I'm just not sure we will be able to swing another round of IVF right now if this ends up being unsuccessful.  I'm trying to stay positive but it's hard sometimes.  In the end though, I know that this is in God's hands and that we will get through whatever comes our way. 

Pre-IVF infertility treatments: that time we were pregnant for a weekend

After having a rough start to 2017 recovering from two brain surgeries, we knew we wanted to wait until 2018 to start trying for another child.  I remember telling Hunter that I wanted 2017 to be our "Netflix and chill" year, until I found out that phrase isn't really referring to binge watching Netflix on the couch in my pj's. 😂

My OB put me on birth control since my pituitary gland was no longer producing estrogen or progesterone.  I wasn't thrilled with the idea but I was also having menopause symptoms, so this seemed to help in that regard.

In November we met with a reproductive endocrinologist to see what she recommended for us when we were ready to start trying for another kid.  She was confident that as long as all of our testing came back normal (which it did-yay!), we should be able to get pregnant with hormone injections and intrauterine insemination (IUI).  The actual IUI part wasn't 100 percent necessary, but she and my endocrinologist at Duke agreed that it would be worth it since the injections are so costly.  She recommended doing no more than three IUIs, as apparently the success rates drop significantly after the third attempt.

I started injections in February (2018).  The first time I had to give myself a shot in the stomach, I was TERRIFIED!  Despite being a human pin cushion for the last two years, I hate needles and dreaded the thought of having to give myself a shot.  After some deep breathing and a few nervous tears, I sucked it up and got it done.  Even more painful than giving myself the shots was paying for them.  Fertility injections are insanely expensive and our insurance doesn't cover any of it.

When you are doing injections, you have to have blood work and ultrasounds done every few days to measure your estrogen levels and check for follicles.  I had several appointments with estrogen levels that were undetectable (ie: teenage boys were producing more estrogen than I was).  My menopause symptoms were returning and fatigue from low estrogen was starting to drain my energy.  I was frustrated that the medicines weren't working and could tell our doctor was as well.  After a few weeks with no results, she told me to stop the injections so that she could speak to the other doctors in the practice and see what they recommended.

Within a day, she was calling me back and telling me to get back on my medicine immediately.  The other doctors told her that because I had hypopituitarism (from the LH), it would take a long time for my ovaries to stimulate.  They steadily increased my dosages and we waited.  And waited.... and waited some more.

Finally in May, after over two months of twice a day injections, my estrogen levels started to rise and we were able to do our first IUI.  Unfortunately, it ended with a negative pregnancy test.

Our second IUI went faster but ended the same, although mother nature was kind enough to save me the hassle of taking a pregnancy test.

I was nervous to start our third round because I knew it would be our last attempt at getting pregnant with IUI.  By this point we had already invested thousands of dollars in injections and appointments, and the thought of wasting more money just to get a negative result made me sick to my stomach.

Luckily, the third round was our fastest and by the end of July, I was in another dreaded two week wait.  Before doing each IUI, I had to take what's called a "trigger shot" to trigger my body to ovulate.  The shot is HCG, which is the hormone that is detected on pregnancy tests.  Therefore, if you test too early, you could have a false positive if the HCG from the shot is still in your system.

I cheated and tested after 12 days on a Saturday.  To my surprise, I got two pink lines instead of one.  I tried not to get excited, knowing it could be from the trigger shot.  The next day I tested again and the lines were darker.  I knew this meant that my numbers must be rising.  Still, I tried to contain my excitement in case it was a false positive.  Monday, the day I was actually supposed to test, I took a test and the lines were both clearly darker.  I finally allowed myself to feel some excitement.  Hunter and I took Sawyer and our dog on a walk that morning.  We tried talking about anything else we could think of but it was clear that those positive tests were the only thing on our minds.

Positive tests before our miscarriage-referred to as a "chemical pregnancy"

Miscarriage and infertility has a way of making you feel guilty for feeling the joy you should feel when you become pregnant.  Instead of saying things like, "When the baby is born..." you say, "If this even ends up lasting..." or "Not to jump ahead but if we are still pregnant next month..."  It really sucks.  I'd say it's one of the worst parts of everything we've been through... knowing that even if we are lucky enough to get pregnant, we won't be able to truly celebrate until there is a healthy baby in our arms.

I headed to my doctor with Sawyer after our walk to get blood work done.  Our nurse was so excited for us and had already texted some of the other nurses there.  She gave me the go ahead to workout as normal so we headed to the gym.

When we got home from the gym, I called Hunter to let him know I hadn't gotten the blood work results yet but would keep him posted.  Within minutes, I was calling him back to tell him that I had already started miscarrying.  He came home from work and I spent the rest of the day crying.  Sad for another baby we lost, mad that I had allowed myself to get excited so quickly.  I had already thought of my "third time was a charm" lines that I would be using as we told everyone the big news.  Now we would have to tell everyone that our final round of IUI wasn't successful.  Even worse, we would have to discuss the three letters that felt more like a four letter word to us: IVF.

It's not a tumor

Did you read that title in your best Arnold Schwarzenegger voice?  If not, stop reading this and go watch Kindergarten Cop.  I'll wait...

So as the title of this post suggests (spoiler alert!), I did not, in fact, have a pituitary tumor.

We spent the Sunday before my surgery in Raleigh with Hunter's brother, Morgan, and his wife, Meggan (plus their two kiddos). Once again, her parents were so gracious to open their home to us, so Hunter planned to stay there with Sawyer while I was in the hospital.  My sister in law had offered to watch Sawyer the day of the surgery so Morgan could be with Hunter at the hospital while he waited.  Again, I cannot overstate how blessed we felt during this whole process to have so many people who offered up their time to help us.

We ate a big spaghetti dinner on Sunday night and had already been eating all.the.carbs. over Thanksgiving and the days that followed.  Let me give you some advice if you have an upcoming surgery planned... don't do this!  I'll explain why later if you can't already guess.

I wasn't allowed to eat or drink anything after midnight, which was honestly one of the parts I was dreading the most about surgery!  I went to sleep that night feeling a decent bit of anxiety.  Monday morning was tough; I was so sad to say goodbye to Sawyer.  I'm so happy that he was still so little when we were going through all of this... I don't know that I could have done it if he was at the age he is now where he calls my name and cries when I leave.

Because Sawyer was still so little (not even four months old), I really didn't want him to be at the hospital near all of those germs!  I was told that I would probably have to stay for a couple of nights after my surgery.

The surgeon had told me previously that my recovery would be about the equivalent of having a "bad cold"  Oh the lies surgeons tell 😜.  Luckily, his nurse had told me to expect a pretty tough recovery period, in which I wouldn't be allowed to pick up Sawyer for a few weeks.  Hunter's work schedule usually slows down in December, so we had planned for him to work from home and help with Sawyer.  We expected that by the time he had to start traveling in January, I would feel mostly back to normal.

Surgery Day

We got to the hospital around 9am that Monday.  Then we waited...and waited... and waited some more.  Finally, around noon, I was called back to prep for surgery.  Did I mention I hadn't eaten or drank anything since dinner the night before?! #hangry

As the nurses hooked me up to IVs and prepped for surgery, I had to sign some consent forms.  The forms essentially listed all of the bad things that could happen, but probably wouldn't happen during my surgery.  They were scary so I signed them quickly and tried not to think about them anymore.  Hunter was able to come see me before they wheeled me away, and I tried to hold it together because I knew we were both terrified.

For some reason, I assumed that I would be sedated before entering the operating room.  Unfortunately, this was not the case.  I was wheeled in to the stark, freezing room and immediately saw MRI images of my brain plastered all over the screens.  I had done a good job of holding it together up until then, but the weight of what I was about to experience finally hit me and I broke down.  Luckily, the nurses were amazing (I have some serious respect for nurses after child birth and surgeries!) and by the time the room was filled with my neurosurgeon and ENT surgeon, along with many other people I didn't recognize, the anesthesia started to kick in.

As I begin to type up this next part, my stomach is in knots just thinking about it.  When I awoke from surgery, I felt worse than I have ever felt in my life.  My mouth was like a desert and my head was absolutely killing me.  The neurosurgeon told me that it was 8:00 pm and that they had to stop during the surgery because they didn't find what they expected.  He told me I was too out of it to get into details and that they would explain it more later.  I expected to be loopy after surgery, but I was painfully alert.  The surgery was only supposed to take a few hours, so I knew that if it took 6 (they started around 2), that something must not be right.  As I was moved into a small recovery area and greeted by Hunter and Morgan, the looks on their faces confirmed my fears.  As much pain as I was in, I felt so bad that Hunter had to spend so many hours not knowing what was going on or how I was doing.  They had given him updates, but I know he was still so nervous.

Hunter informed me that the surgeon had to stop operating and do a biopsy for pathology.  The rest of the details were still fuzzy, and it seemed like no one really knew what they had found yet.  I was told it wasn't cancer, so that was a huge relief.

The pain I experienced after the surgery was indescribable.  I remember telling Hunter, "I would have 100 c sections before going through that again."  I kept telling the nurse how much pain I was in, and he kept calling to ask for permission to give me more pain medication (they were giving me Dilaudid, which I had never heard of but later learned was a VERY strong narcotic).  Nothing was helping.  I was so thirsty and begging for water, but they wouldn't let me drink anything until they were confident I wouldn't get sick.  He gave a wet foam brush to put on my tongue, but even that little bit of water was making me nauseous, so he had to take it away.  I knew that at least part of my pain was due to the fact I hadn't had anything to eat or drink in over 24 hours, but I wasn't sure why I was so dehydrated when they were giving me fluids in my IV.  I finally figured that recovery from this surgery must really suck more than I expected (and I was expecting a decent level of suckyness!).

I sent Hunter home (well, to our home away from home in Raleigh) to spend the night with Sawyer, and hoped that I would be able to fall asleep once I got into my own room.  My head felt like the worst migraine I had ever had times a thousand.  I also had packing and plastic splints up both nostrils and gauze over the outside of my nose, which was as uncomfortable as you'd expect.  Once of the nurses was so sweet and tried to prop pillows in front of any of the lights from the outlets and monitors in the room.  My sister in law had also given me a sleep mask which really helped since the light made the headache worse.  By the middle of the night/early morning, I was finally able to drink some water without becoming nauseous.  I was also starving, so the nurses were able to wrangle a few cups of jello and applesauce to hold me over until they started serving breakfast.  The pain was still bad, but having something to eat and drink made it a little more manageable.

I couldn't believe how thirsty I was by the morning.  By the time Hunter got to my room, I had probably drank several liters of water.  I was literally dreaming of water and smoothies and icees... nothing seemed to quench my thirst. The residents make their rounds early at the hospital, and when they talked to the nurses and heard how much I was drinking, and the output (TMI but I still had a catheter in at this point), they were concerned.

Remember the consent form I had to sign but didn't really read?  Well, one of the risks of this surgery was developing Diabetes Insipidus (DI).  Basically this meant that my body couldn't regulate how it handled fluids, and it was leading to the intense dehydration I was experiencing.  I was told that it could be a temporary side affect, but it could also be permanent since the antidiuretic hormone is controlled by, you guessed it, the pituitary gland!  I was monitored closely and put on medication, which quickly helped. I also had to measure my "output" in a fun hat on the toilet once I was able to ditch the catheter.  Good times.  Luckily, my DI went away after a few days.

Diagnosis

I stayed in the hospital until Thursday so they could monitor my DI and manage my pain levels.  After seeing all 3 of my doctors and getting various answers from each of them about what I actually had, I finally got a confirmed diagnosis.  I have Lymphocytic Hypophysitis.  At the end of my pregnancy, my pituitary gland became infiltrated with lymphocytes, which caused it to stop functioning properly.  It's a very rare (and likely underdiagnosed since it requires a biopsy to confirm) autoimmune disease.  On top of being rare, mine was apparently abnormal in that it appeared exactly like a pituitary tumor on MRIs.

The neurosurgeon wasn't sure how much damage was done to my pituitary gland already, so I would have to have another MRI to see if the swelling had gone down.  It would also take some time to see if my hormones would go back to normal or if I would need to remain on hormone replacements for life.

We stayed in Raleigh over the weekend as I had to go back on Monday to have the packing removed from my nose.  That was fun!  Throughout my stay at the hospital, the doctors and residents were constantly checking to see if I had any drainage from my nose.  That's because another major risk of this surgery was having a cerebral spinal fluid (CSF) leak.  I had developed a leak during surgery, but they had repaired it.

Snuggling in Raleigh during recovery... this was me on a good day during that week. Yikes!

Recovering at home... or so I thought

A week after my surgery, I was still feeling pretty crappy but was more than ready to go home.  Hunter and I were both exhausted so we decided to head home after having the packing removed so we could sleep in our own bed. 

So exhausted

That night, I woke up in the middle of the night with a terrible nose bleed.  It lasted a good 45 minutes (and made my bathroom look like a scene from a horror film), and Hunter ended up calling Duke and was advised to get me Afrin.  He went to Walgreens around 3 in the morning to pick some up, but luckily it had finally stopped by the time he got home.

I spent most of Tuesday on the couch.  As much as I wanted to enjoy being home and back with Sawyer, I just didn't have any energy.  I went to bed early on Tuesday night and told myself I would get up, shower, and get myself together on Wednesday.  Life had other plans.

In the middle of the night, I woke up shivering.  I made Hunter lay close to me since he is a living furnace, and that should have been his first indication that something was wrong; I usually hate being touched when I'm sleeping!  Sawyer woke up early and Hunter got up with him. I wanted so badly to help but just couldn't stop shivering.  I was thirsty but too tired to go downstairs, and I felt awful bugging Hunter when he was already so busy with the baby. I finally had to get out of bed to go to the bathroom. 

As I was sitting on the toilet (sorry, TMI), my vision became blurred.  Everything was quickly going black so I screamed for Hunter to come upstairs.  I told him I couldn't see but that I wanted to go to the sink to wash my hands.  That was the last thing I remember.  A few minutes later, my vision started coming back and I was in Hunter's arms as he sat on the floor cradling my head in his lap, frantically talking to 911.  I heard him telling them "she hit her head on the wall".  I must have come back to my senses pretty quickly and realized that an ambulance was likely on the way, so I told Hunter, "I'm so gross, I haven't showered!  I need to shower before they get here!"  Yeah...that didn't happen.  Then I went into planning mode.  There was no way I was going to let Sawyer go into a nasty emergency room.  We racked our brains to think of who would be home on a weekday morning.  Luckily, our neighbor down the road was working from home and was so kind to watch Sawyer while we went to the ER.  (He also took care of Colt for us a lot of the time that we were gone which was so sweet).

Two paramedics loaded me onto a stretcher and down the stairs, into the ambulance outside our house.  I was trying to explain my now extensive medical history to them, but I could tell they weren't quite understanding how serious this could be.  I told them that I would need steroids immediately since I had adrenal deficiency.  This was one of those situations where, in a healthy person, the adrenal glands would be kicking into overdrive to handle the stress.  When they put me into a room they explained to the doctor that I was there for complaints of a headache.... yeah not quite. 😒

I spent all day Wednesday in the ER as the doctor communicated back and forth between me and the doctors at Duke.  I began noticing some leaking out of my nose and was really trying hard to convince myself it was just a runny nose from the surgery.  The doctor in the ER wanted to do a spinal tap to check for a CSF leak, but there was no way I was going to have anything done anywhere other than Duke, where they were familiar with my history.  My ENT surgeon agreed to Facetime with us so that he could see the dripping for himself.  That was when they told us we would need to come back to Duke immediately.

I couldn't believe what was happening.  After everything we had already gone through, we were headed back to Duke.  We had already received help from so many people.  Family and friends had taken off of work, and now we were going to have to inconvenience everyone again and, worst of all, leave Sawyer again.  I was absolutely heartbroken.

Going back to Duke

Hunter quickly went home to throw together some bags for us and the baby, pick up Sawyer, and head back to the hospital to take me to Duke.  By the time we got there it was late, but his brother saved our butts again and met us in the parking lot to trade cars and take Sawyer back to the house in Raleigh with him.  We had to go to the ER, but they had already received my information and we were able to get in immediately.  The room was small and loud and just awful in every way.  Hunter didn't even have anywhere to sit for a few hours.  After midnight, some of the residents that I had been working with came to our "room", if you could even call it that.  Side note... why did they all have to be super attractive people that were always seeing me looking like 2007 Britney Spears?!

They asked me to hold a cup under my nose to watch the leak.  Within a minute, the cup was quickly filling up, and my hope was fading just as fast.  They then gave me the news that I had been praying I wouldn't hear... I would have to have another surgery to repair the leak.  I immediately broke down into tears, and I don't think I stopped crying until they got us into a real room Thursday morning. 

The CSF leak explained the terrible pain I was in after the first surgery.  In speaking with the doctors, we assumed the leak had probably started before I ever noticed it, and intensified after hitting my head on the bathroom wall.

Once we got to the room, I took a shower before they could tell me I wasn't allowed to, as I knew it took a few days the last time to have enough energy to be up and about.  I also drank some water out of the tap as I brushed my teeth since I had once again been told not to eat or drink anything. 

Thank God the second surgery was not nearly as bad as the first, and I woke up feeling pretty decent compared to how I had felt the last week and a half.  I did develop DI again, but it went away before I was released.  I missed Sawyer too much the second time around, so I had Hunter bring him to the hospital so I could get a few snuggles in with my favorite little guy.  If there was ever motivation to recover quickly, it was him.  I stayed in the hospital until Sunday, and we stayed in Raleigh with Meggan's amazing parents once again.  On the 21st of December, I had some super tampons pulled out of my nose once again, and we decided to play it safe and stay another day to make sure there was no more leakage.  We headed home just in time to spend the holidays at home, and even made it to church on Christmas Eve.  For Christmas dinner, we ate frozen pizza and counted our blessings.  It was the best/worst Christmas ever.

Recovering... for real this time

Over the next month, Hunter's parents, my parents, and two of my best friends took turns staying with us to help with Sawyer (and bring me bananas and Gatorade in the bathroom when I was too exhausted from showering to make it downstairs...true story).  Hunter was able to get out of one of his travel commitments for work, but had to head out on a couple of trips in the latter part of January.  I wasn't allowed to pick up Sawyer for fear of developing another CSF leak, so we were so thankful for the help.  As someone who doesn't like hates asking for help, this was truly a humbling experience.  They say "it takes a village", and I can tell you our village was the absolute best! 

Recovery was slower than I had hoped... I really thought I would have way more energy and was frustrated when simple tasks would wear me out for the day.  My endocrinologist put me on a high dose taper of Prednisone which certainly didn't help me feel any better.  It did, however, take care of the inflammation that remained from my LH.  Once I finished the Prednisone and resumed my normal dose of hydrocortisone, I finally began feeling like myself again and was able to care for Sawyer on my own during the day while Hunter worked.  While we were so blessed to have such amazing help, it sure felt good getting to have that sweet boy to myself again! 

Postpartum testing and preparing for brain surgery

After we brought Sawyer home, all I wanted to do was snuggle him all day.  The newborn stage is so hard but I just loved it!

I remember my sister commenting on how tired I looked when she saw this picture...she was right!

Once of the tougher parts for me was not being able to breastfeed.  I had heard that breastfeeding was really hard, so I felt prepared for it to be challenging and painful.  What I wasn't prepared for was not producing any breast milk... at all!  I attempted to nurse him at the hospital and couldn't really tell if he was getting anything.  We knew that it could take a few days for milk to come in so I assumed it would just take time.  Unfortunately, his weight was dropping so we ended up having to use formula (again, not part of my "plan").  Would you believe that babies sleep so much better when you're not accidentally starving them?! 😬 I still attempted to nurse before feeding him formula, but after two weeks and a prescription to help my milk come in with no results, it was clear that it just wasn't going to happen.  It was obvious then that the pituitary tumor was affecting my hormones.

The neurologist that I had seen previously scheduled an appointment for me with an endocrinologist in the area.  WORST. EXPERIENCE. EVER.

The details are hazy because I was still in a sleep deprived, postpartum cloud, but the endocrinologist had the worst bedside manner of any doctor I've ever met!  After getting my blood work results, she told me, "I'm surprised  you survived your c section."  😧 When I asked her if we would be able to have any more children, she insinuated that it would not be possible.

I was diagnosed with adrenal deficiency and hypothyroidism.  That explained the severe fatigue I had been experiencing (and assumed was just how everyone felt with a newborn!).  The adrenal deficiency was especially dangerous, since the cortisol produced by the adrenal gland regulates blood pressure, the immune system's responses to viruses and bacteria, and metabolism.  The hypothyroidism explained why I hadn't had an appetite since having Sawyer.  I was prescribed hydrocortisone and levothyroxine to replace the missing hormones.

After seeing the endocrinologist (for the first and LAST time!), the neurologist wanted me to have another MRI to see if the inflammation had decreased since giving birth.  Luckily, my vision had returned to normal, so I was hopeful that everything was returning to normal.

This MRI took place at a different facility.  I really hated the first one since I'm claustrophobic and hated the noise, so I was feeling pretty anxious.  When they walked me back to what looked like a bloodmobile and had me lay on the table to start, I lost it.  Within minutes I broke down in tears and they had to pull me out of the machine.  I felt so dumb and hated that Hunter had taken off of work to come with me and watch Sawyer, but I just couldn't handle the tiny portable on top of being in an MRI machine!

They rescheduled me at the original location and prescribed me a Xanax 🙌, so I was able to make it through the second attempt.  The tumor was still present, so the doctor wanted to discuss plans for surgery.

Throughout this whole process, we were trying to keep our families in the loop.  My sister-in-law's father got wind of what was going on, and decided to speak to his friend who is a doctor at Duke Hospital.  He told him that he would not let his own daughter have this surgery in Columbia, SC, and was kind enough to get us in to see an endocrinologist at Duke.  We are SO forever grateful of this favor, especially since it usually takes months to a year to see her.  We were able to meet her within a matter of weeks.

And so began our journey of traveling back and forth to Duke on a regular basis.  Our sister-in-law's family was also kind enough to let us stay with them in Raleigh when we had appointments and they even helped watch Sawyer.  Again, no words can describe how grateful we were/are for their help and support!

To make a long story short (too late for that?), the endocrinologist kept me on the medicine I had been prescribed and I met with a neurosurgeon and an ENT surgeon.  The neurosurgeon recommended that I have transsphenoidal surgery to remove the tumor.  He described it as "a giant nose picking" where they use an endoscope and some other scary tools that I blocked out to go through my nose and carefully remove the tumor.  The ultimate hope was to not have any major damage to the pituitary gland so that it could regain normal, or at least semi-normal function.

The ENT surgeon's part would be to get  the neurosurgeon in and out through my sinus cavity.  I was smart at this point and stopped googling things about brain surgery!  He also told me I had a severely deviated septum, so he would fix that while they were in there as well.  BOGO!  (Haha...not quite)

We scheduled my surgery for Monday, December 5, 2016.  We already had plans to go to St. Petersburg, FL after Thanksgiving, and I figured if I had to lay around and recover, I might as well do it while Christmas movies were on TV!  Of course we had a few more trips back and forth to Duke before my surgery to meet with the anesthesiologist department and ensure I was healthy enough for surgery, but after that we just had to wait.  Luckily between traveling and taking care of a newborn, I didn't have much time to sit around and worry!

Our Baby is 2!

I'm a few days late, but we officially have a two year old!  Sawyer's birthday was on Wednesday and we began the morning by singing to him and watching him blow out a candle in a doughnut.  He was thrilled to come downstairs and find his presents and his Mickey Mouse decorations (I went very minimal with a banner, table cloth, and a couple of balloons... it doesn't take much with little ones!).

Getting ready to go to bed for the last time as a one-year old!

After we played with his new toys for a while, we headed to the park for some outside playtime.  Sawyer is a busy boy and does SO much better when he has time to run around outside.  Once we were done playing at the park, we headed home for lunch and nap time.  The afternoon included more playtime with the new toys, and enjoying his favorite foods for dinner... eggs and toast. Any time you ask him what he wants to eat, whether it is for breakfast, lunch, dinner, or a snack, he always replies with "egg.. toast".  It's an easy meal though so I'm not complaining!
 

We ended his birthday with ice cream at Cold Stone since we wanted to wait until the weekend when his cousins were in town for cupcakes.

Hunter had to work on Sawyer's birthday but took some time off on Thursday so that we could take him to the splash pad at our local zoo.  He had his two year well visit first, which ended in a fit of tears after a finger prick.  Luckily by the time we got to the splash pad, he was in a much better mood and had a blast running around and playing in the water.

Hunter's brother came in to town with his kids late Friday night.  It's so fun to have them all together now that they are getting a little older and will actually play together.  We played at the pool, ate pizza and cupcakes, and visited a splash pad at our favorite park on Sunday before they had to head home.

I know most people refer to this time as the "terrible twos", and trust me, he definitely has his moments.  Overall though, I am loving this age!  We can finally go places that he was too little for last year, and he is soaking up everything around him.  Over the last two weeks he has really started putting together words more to say little phrases.  When we press the gas pedal after stopping at a light, Sawyer will shout "Go, go, go, car!"  It's just so fun to watch his curiosity grow and his imagination at work.  If only I could keep him this little forever!

Meeting our precious boy

Despite the fear and anxiety that had surrounded us over the past month, we were surprisingly calm about the process of bringing Sawyer into the world.  Of course, I'm writing this nearly two years after his birth, so I may have forgotten some of our fears by now!

My OB scheduled us to come in at 7:15 a.m. on Monday, August 15th, the day after our due date.  I didn't have much time to really think about the fact we were going to have a c-section rather than the vaginal birth I had been planning on all along.  Being Type-A though, a planned c-section did have some perks.  I was able to get a manicure and pedicure just the day before (which some very nice woman at the salon paid for...so sweet!).  I was also able to take a nice hot shower and put on a full face of makeup before heading to the hospital.  I've heard that some doctors tell you not to wear any makeup or nail polish.  Mine did not and I prefer to ask for forgiveness rather than permission 😉.

Last pregnant picture before heading to the hospital!

Before we knew I was having a c-section, we imagined rushing to the hospital in the middle of the night while I was in intense labor, or maybe having my water break in the dollar spot at Target.  This experience, however, felt more like showing up for a dinner reservation.  "Um, hi, we're here to have a baby.  Table for 2...3?"

We got into a room to get prepped right away.  The first IV they tried did not work, so they had to switch hands.  That made me a little nervous but the nurses helped to alleviate my fears.  Hunter kept asking me obsessively, "Are you okay?" "Is everything alright?"  I guess he could tell I was nervous, and I know he was too.  Finally, one of the nurses looked at him and said, "Let me give you a piece of advice... stop asking her if she's okay.  She's not okay, she's about to have a baby cut out of her.  She's terrified." 😆 It was pretty hilarious and helped both of us take a deep breath and relax as much as we could.

The next hour or so consisted of a lot of sitting around and waiting, and explaining my newly complex medical history to the nurses.  By 9:30 we were in the operating room.  This is where the panic set in.  I guess I hadn't really thought much about it, but I didn't realize that I would be in an operating room rather than a normal delivery room.  It was freezing cold, sterile (a good thing for an operating room!) and very bright.  Hunter wasn't allowed in for the first few minutes which I hated, but we were lucky enough to have really sweet nurses.  I kept waiting for George Clooney to rush in ER style... no such luck.  The scariest part was getting the spinal, but the anesthesiologist was really comforting and it wasn't as bad as I had anticipated.  It kicked in quickly and was the strangest feeling to not be able to feel the lower half of my body.  To the right of my head was a screen monitoring my vitals.  My blood pressure got really low (around 90/60), but since it tends to always run a little low, no one seemed too concerned.  In hindsight, this was probably a result of my hormonal deficiencies and could have been quite dangerous.

Hunter was finally allowed in the room, in full scrubs.  He made sure to stay on the "good side" of the curtain which I agreed was a smart choice!  Within minutes, she was cutting me open.  The doctor told me I would feel some pressure but no pain.  It was a bit like having dental work with novocaine; you can feel them working but it doesn't hurt.  At 9:50 a.m. she pulled out Sawyer (definitely felt pressure!) and we got to hear that amazing little cry we had been dreaming of for nine months.  We both started crying as we realized how truly blessed we were to finally meet our sweet boy.  I was able to hold him on my chest for a moment as they finished the surgery.  We were both shocked that against all odds, he actually had hair!  I told Hunter to go with the nurses as they got Sawyer cleaned up.

Once my surgery was finished they moved us into a temporary room so that I could have some skin to skin time with Sawyer.  I am not exaggerating when I tell you Sawyer was the most beautiful little boy anyone has ever laid eyes on.  Everything about him was just so perfect and tiny.  It was so hard to give him up anytime they had to run tests on him or weigh him!  We were in our own room within a few hours (and they finally let me eat and drink, yay!). 

7lbs 3oz, 20.5 inches

I remember thinking that afternoon, "c-sections are so easy, I can't imagine why everyone wouldn't have one!"  And then the spinal wore off.  Holy pain.  You know how trainers at the gym always tell you that you should work on your core because it support's the rest of your body?  Yeah... they're not lying. I could not move anything!  The nurses wanted me up and about as soon as possible, and I had to go to the bathroom by midnight or I would have to have another catheter.  I felt like I was 120 years old trying to get myself out of that hospital bed, and that was with the help of Hunter and a nurse.  Trying to go to the bathroom was a whole 'nother issue that I won't get into, but just know that you need core muscles to do that too!  Hunter saw too much.  When people tell you that you lose all shame after giving birth, they aren't lying!

Luckily, the pain got better each day (also, again, this was two years ago.  I've conveniently tucked those memories in the way back of my brain).  Plus, you are so excited and busy with a sweet little newborn that you don't have the time or energy to think about the pain. 

We got to bring Sawyer home to meet his fur brother on Thursday afternoon.  Our sweet neighbors decorated the house with balloons and handmade signs from all the kids, which immediately made me cry because, well, postpartum.  But it was really the nicest gesture and made us feel so at home even though we weren't living near family anymore.  Once we were inside and had given little man the grand tour of our downstairs, we promptly settled Sawyer into his bouncer seat and both fell asleep in the living room like the true, new parents that we were.

My parents came up the following day, and Hunter's family stayed with us the following few weekends, so our house was filled with a lot of love and some much needed help so I could take a nap!

Secondary infertility...let's start from the begining

I can't recall a time in my life where I didn't imagine having children.  I never dreamed of climbing the corporate ladder.  Despite a few bad breakups, I never thought I'd stay single and travel the world.  Visions of my future always included a family.

When I started dating my husband, Hunter, I knew he would make the best dad (I was right about that!).  He wanted children as well, so we began trying a few months after our wedding.  My mom had me when she was 45 and my husband is a twin, so I naively assumed that we must be really fertile and getting pregnant would be easy.  I had heard so many stories from friends who conceived on their first or second try, so naturally I assumed this would be our reality as well.

I got pregnant at the end of May in 2015 and we were over the moon.  It had taken longer than we thought (a whole 5 months... if only I knew then!) but it had happened and we were finally going to be parents.

And then I had a miscarriage at 6 weeks.  Our world came crashing down on us. It was a terrible summer.  I was teaching at the time, so the extra free time did not help my sanity.  We knew that miscarriages were common, however, so we decided to start trying again right away.  Again, we were told stories of friends who got pregnant their first cycle after having a miscarriage and went on to have healthy pregnancies so we were confident that we would too.

When November rolled around that year, I was tired of tracking cycles and getting my hopes up each month only to be let down when only one line appeared or my period showed up late.  We decided that we would take a break and talk to my OB after the holidays to see what we needed to do next.  I decided not to take a pregnancy test before my girls trip to Atlanta the first weekend in December (I knew getting a negative would just bum me out and I was used to my cycles being all over the place after my miscarriage).  The next weekend I was particularly short tempered with Hunter after my work's Christmas party.  He said, "I bet you're pregnant!"  I took a pregnancy test that night to show him how un-pregnant I was.  Low and behold, the test was positive and I was pregnant with our sweet Sawyer.

Besides some terrifying spotting at the beginning, I had a pretty healthy pregnancy.  It was impossible not to be anxious considering our first pregnancy ended in miscarriage, but by 12 weeks I was finally able to relax more and allow myself to feel excited.

We moved from Florida to South Carolina in the beginning of the summer in 2016 when I was about 7 months pregnant.  My best girl friends were sweet enough to come visit me in July to see our new house and spend sometime together before our little man joined our group.  The weekend they were here, I started feeling like I had a bad cold.  I was getting headaches and felt like there was something irritating my left eye.  My husband even had to come pick me up from our girls lunch and bring me home while they got pedicures.  I was bummed to miss out on the fun, but assumed that it was just "one of those things" that you deal with during pregnancy.

Over the next couple of weeks, I couldn't shake the headaches and vision problems.  The minor headaches turned into major migraines and my vision got so bad that I could no longer read the TV guide to change the channel.  I kept thinking that it must be sinus related and was using eye drops constantly.  Everything I read told me that headaches and minor changes to vision were normal during pregnancy, so I tried to brush it off.

I went to Hobby Lobby one day to look for some nursery decorations.  As I walked into the store, I felt like I was blinded by the florescent lights.  I couldn't see anything on either side of me in the aisles and knew that this was no longer a normal pregnancy symptom.  I made an appointment to see an optometrist that week.

Once I saw the optometrist that week, he referred me to an ophthalmologist because my issues were outside of his expertise.  He didn't seem overly concerned so I tried not to stress too much.  The ophthalmologist got me in right away (being 8+ months pregnant has its perks).  My husband drove me to the appointment because I thought they might have to dilate my pupils and, honestly, because I was a little nervous.  They did an x-ray on my eyes but didn't find anything concerning.  Then
the doctor held up a square paper with a grid on it that was split into 4 sections.  It was then that I realized I couldn't see any of the top left corner.  I could tell that the doctor was concerned as he stepped out into the hallway to ask two more doctors to examine me.  I spent what felt like an eternity in the exam room, and finally he told me that he wasn't sure what was causing the issues, but it could be pregnancy related.  He scheduled a repeat exam for the following week.

Hunter looked really nervous as I walked out into the waiting room.  I think he probably chalked my headaches and visual disturbances up to pregnancy symptoms before, but after seeing how long the doctor spent with me, we both realized this wasn't as common as we had hoped.

The following week I went back to the ophthalmologist but told Hunter not to take off work to come with me.  By this point I figured it would just be another quick exam and I would be sent on my way.  Imagine my surprise when after doing another visual fields exam, the doctor wanted me to have an MRI done on my brain.  He scheduled an appointment for the very next day.

I can't even remember exactly what I did at this point, but I remember driving home with tears flowing down my face as I gave the news to Hunter over the phone.  We were terrified.  The next day, he rubbed my leg while, feeling very much like a beached whale at almost 9 months pregnant, I laid on a table to have an MRI done on my brain.  (Those are NOT FUN by the way, especially if you are claustrophobic like I am!)

I got the MRI done on a Friday afternoon, and was told I wouldn't have any results until Monday.  We knew there wasn't much we could do at that point so we ended up just going to dinner that night and tried not to think about all the "what ifs".  I had done my fair share of Web MD'ing but the results were so scary that I had to stop reading them.  To our surprise, the ophthalmologist called me around 6pm that day.  He was anxious to find out the results and had stopped by the imaging center on his way home.  To be honest, most of the conversation is a blur but he told me, "It's the result I was hoping for, the other would have been really bad.  You have a pituitary tumor."  I was too afraid to ask what else he thought it might have been.  Pituitary tumor was scary enough for me.

I saw a neurosurgeon the following week to discuss the results of the MRI.  He told us that sometimes the tumors go away on their own after pregnancy, and sometimes they have to be surgically removed.  Because I was so far along in my pregnancy, our only option was to wait and see what would happen after I delivered our son.  Pituitary tumors can also affect your hormones, but he didn't want to test anything until after I had delivered since pregnancy hormones are already so all over the place.  The tumor was pushing on my optic nerve, so he told me he didn't want me in labor for too long for fear that it could make it worse and potentially make me go blind.

He spoke with my OB and she decided that she would feel much safer performing a C-Section, as labor can be unpredictable.  Although that certainly wasn't part of my plan (what has been?!), we all agreed it was the best option.  She scheduled us to come in on August 15th at 7:30 to prepare to meet our son.

It's hard to believe that all of this happened within a month.  I know that all babies are a blessing, but I truly think that Sawyer saved me from losing my mind during this tough time.  We were so focused on getting him into this world safely that we didn't have the time or energy to worry as much as we would have otherwise.

I will share the story of his birth and how it lead to where we are now next, but I think this post is long enough!