Here's How it Went Down

As I stood in the delivery room removing my clothes with unsteady hands, the reality of my situation was sinking in.  I was going to be a mom. By the end of the day.  I didn't feel ready for it to happen.  I was ready to be ready on April 11th, but not March 29th.  However one precious, little girl had entirely different plans.

If I am blessed enough to have a second child I will make a rule for myself in order to prepare for his or her birth: do not take a temp job two weeks prior to delivery.  After all just because a C-Section is scheduled for a specific day doesn't mean the baby will be patient and wait.  This is what happened.  With the option to earn a few extra bucks before taking an unofficial maternity leave, I took a seven-day temporary job in Ballard thinking that my baby was cozy enough in the womb and would stay there whilst I worked.  This job entailed me answering phones at a small insurance office while the proprietor went on vacation.  I would be alone in the office, and I was instructed to bring books/projects to work on.  This job was looking even better, as I still have wedding thank you notes to write and get out before the baby is born.  (They may never get finished...)

I spent the day with the owner on Thursday March 28th, and the following day I bid him bon voyage and settled into a week of work.  An hour or so later, I started to prepare myself for my weekly doctor's appointment.  I ate lunch, and naturally visited the bathroom before leaving.  As I stood up after using the toilet I felt a gush of liquid.  I paused, and thought, "Did I not finish?"  When one pees while laughing and sneezing, one would understand why that was my first thought.  I sat back down, and it happened again.  This time I realized I did not have a bladder control problem, I was leaking fluid.

Panic.  I was not supposed to go into labor.  I was not supposed to go into labor while taking a week-long temp job where I would be by myself.  So it was hard for me to accept it was actually happening. I did, however call my husband and told him to be on stand-by.  "What do you mean?" he asked.  I explained that I was leaking fluid, and I was going to my doctor's appointment, and they will confirm if I was actually going to have the baby that day.  He asked a female coworker if it was possible for a pregnant woman to leak fluid and not have her baby, and she told him to get to the hospital.  Panic.  My poor husband went into panic mode.

I continued to leak on my way to the car, and while I sat in I-5 traffic.  Each burst confirmed the inevitable--the baby was coming today, and hopefully not as I sat in traffic.  I wasn't having contractions at this point, but Seattle traffic is bad enough to cause a nervous girl to worry.  My husband called my clinic to let them know that I was running a bit late, and that my water broke.  So when I finally arrived, wet and nervous, they had a wheelchair ready to wheel me to the hospital.

Once in my room, I stood there shaking and holding my legs together tightly, I fumbled while trying to undress and get on the bed.  In a matter of time I was going to have a baby.

My very nervous husband arrived shortly after I did, and for the next hours, we answered phone calls, talked to the nurse, and exchanged thoughts of bewilderment.

 These aren't really the most attractive photos on the planet....I really look like a beached whale.

The OB on duty wanted to have me in the operating room as soon as possible.  Unfortunately I ate lunch before leaving the office, and anesthesiologist wouldn't approve the c-section.  I was told that if I was in active labor then they would of course have to do the operation.  I was not in active labor.  Sure, my water broke, but my little baby was quite content to stay where she was in the womb.  She was still breech, and quite cozy in her little spot.  And since I couldn't keep from smiling the OB stated that no one would believe I was in active labor.  I was admitted at 1:30, but probably wouldn't see the inside of the OR until 7:00pm.

Soon 7:00pm came and went and we were still waiting to get our baby out.  Outside of our secluded room, the delivery wing of the hospital was in quite the commotion.  Our hospital is the go-to hospital for emergency births, and March 29th was chock full of emergency c-sections.  Even at seven, I was not really in labor.  Perhaps I was getting a contraction now and again, but they were nothing that would cause me to lose the smile on my face.  Our 7:00 window turned into the 7:30, then 8:00...so on and so forth.  We nervously wondered when we would get our turn, and joked that we would probably be able to watch Grimm that night after all.  We decided against it, since we were sure we would be too nervous pay attention or we would for sure get wheeled into surgery half way through.

By 9:30, the hospital administrators came in our room to apologize for the delay, and told us that they would break hospital policy to get us into the OR.  Because this hospital is the emergency birthing center, they have to leave one operating room ready for any emergency c-sections that could come through the door.  But because they felt sorry for me, they decided to put me into the extra room so I could finally have my baby.  They even called up another anesthesiologist to give me my spinal.

At 10:00pm I was finally wheeled into the OR, which is a good thing since I was really starting to have contractions.  Though, they were weak enough that I still smiled through them.  Once in the operating room, real nervousness sunk in as the birth, the baby, and the reality of a new life began to sink in.  Add to that the reality of anesthesia going into my spine...  I was blessed to have a fantastic Labor & Delivery nurse who had three c-sections and was able to give me a detailed picture of what I would be feeling throughout the process.  (I was also lucky to have her as one of my postpartum nurses afterward.  She was awesome!!!)  The spinal hurt a little, but it was the brief period of time while the medication raced through my body that scared me the most.  I had strange neck pains while the rest of my body felt dead.  (My husband didn't like me using that analogy, but that's how it felt.)  Before I knew it, the first cut was made and I was soon feeling the tugs of the crew getting my baby out.

I was informed that I needed a bigger incision to get my baby out.  First of all she was breech, secondly the doctor was concerned about her nose, and lastly I apparently have really strong abdominal muscles. This is the point in the operation that my husband claims that I got really chatty as I described my pre-pregnancy workout routine to anyone who would listen. (Yay for Ellen Barrett videos!)

Soon we heard the words, "That's a big baby," and I knew that she was out.  My husband was invited to take a peek at her (and my insides), as the large neonatal crew got to work cleaning, and checking out my baby.  It was not too long after that she made her first cries that we knew she was alright.  One doctor came over to let us know that she could breathe on her own, and the mass on her nose was not obstructing her airways.  Tears of joy and relief overcame me and my husband.  Soon the neonatal crew called for my husband to get our baby so I could see her.  So tiny and so sweet I was sad I didn't have use of my arms to hold her.  The neonatal team then gathered her and my husband and off they went to the NICU where I would see her later.  The remaining doctors and nurses sewed me up quickly, and before the clock struck 11:00pm I was back in my room to recuperate from surgery.

The anesthesia and nerves caused me to shake uncontrollably as I waited the hour until I could see my baby.  In that time my cousin fed me ice chips while I tried to get my toes to wiggle.  I was glad to chat with her; it took my mind off of the wait.  It was weird knowing that I was now officially a mom, but that my doctor was so far away and I hadn't even had a chance to have a good look at her.  Emotion filled my voice as I nervously chatted.

Finally it was time to see her!  My huge bed was wheeled up to the NICU, and he nurse placed a squirmy infant in my arms.  She soon calmed down and settled into my arms.   She knew me!  She actually knew who I was!  The post-labor hormones were settled in place and I became a blubbering baby.  (To be totally honest, those pesky hormones have not gone away.  I cry all the time about everything.  Seriously.)

We took our first family photos and then it was time for us all to rest.  It was so hard to say goodnight to her.  But we were so relieved that she could breathe on her own, and the upcoming days would shed light on her health.  This post has been long enough, and I will soon give a full update on our sweet daughter.  It may take a while to get everything written.  Typing while I pump in the middle of the night is not super easy; I usually end up falling asleep.

Everyone Loves a Field Trip

Now that we have received all the information about our babygirl's health possibilities our trips to the doctor have been a bit more mundane.  When I go to the doctor I get an ultrasound, a non-stress test, and then a quick visit with the doctor.  Last week, however, I got to go on a field trip to the NICU. I was excited--who doesn't like a field trip--but then I was reminded me that even though we have so much good news about this baby, she still has to spend some time in the NICU.  I didn't cry, but perhaps got a little misty when the social worker instructed that she will be carted away to the NICU shortly after she is extracted from my womb.  I'll get to see her before she goes, but briefly. (This will depend on her ability to breathe through her nose.)  Luckily I have a sweet husband that will be able to go and be with her while I am getting stitched up.  After I am all done I get to be wheeled up to spend some time with her before I go to my recovery room.

Walking through the doors of the NICU made everything seem more real.  I was encouraged to know that sweet babygirl will probably be the biggest baby there. (As she is right now, she's probably already bigger than the babies in there.)  All the other babies were so tiny, it broke my heart to see them--so fragile and delicate, and all hooked up to monitors.  It made me want to gently cuddle each of them.  But I wasn't allowed to.  But I will have twenty-four access to my baby when she is there.  Both my husband and I will.  And chances are my husband and I will try to be there for the full twenty-four each day.  Even though she will share a wing with other infants, we can curtain ourselves off for private time with our baby, including nursing time.

She will be hooked up to monitors, just like the itty bitty babies, and in the early hours of her life will have an MRI and an echocardiogram so that her doctors will know exactly what we are dealing with.  My husband and I feel bad that she has to be poked and prodded so soon, but I know we will be relieved with the information given.

And now a note about visitors.  Since most of you don't live in the area this doesn't really apply, but for the few readers in the area this may be pertinent.  Since I am having a c-section, we will be in the hospital for at least three days, and wouldn't mind a visit.  Keep in mind that visits to the NICU might be a tad tedious since only the baby can only have to visitors at a time, and one of those visitors must be a parent.  (This translates to one guest at a time.)  Additionally, children under the age of twelve are not permitted.  We will not feel unloved if everyone decides to wait until we are home to make a visit.

I am glad that I was able to take a tour of the NICU.  I am reassured that my baby will be in good hands with 24-hour doctors and nurses.  I am relieved that we will have so much access to her. (I look forward to seeing her so much.) And with what we do know I am so hopeful that she will be coming home with us.  We have twenty-two more days until she comes out. (Unless she has her own ideas, and let me tell you, there are days when I want her out now.  But that sentiment comes from sleepless nights thanks to all the stomach acid I choke on every night...but that's about me.)

  

Understanding Miracles

Right now Babygirl and I are having music time.  I turn on an Accuradio classical channel and we listen while I do stuff on the computer.  I think she likes Chopin and Dvorak the best.  She has a tendency to move around a bit more when we listen to their works.  Although her movements could be her attempts to stretch out.  She's breech, and her little head often makes an appearance at the top of my belly.  At our ultrasound on Friday, her weight was estimated at 5 pounds 12 ounces--that's about one pound more than your average baby at 34 weeks.  So I wonder how big she'll be when the doctors take her out on April 11th.  I think I should be glad I am having a C-section.

I do want to thank everyone who continues to pray along with my husband and me.  When we were at our most grieved, we talked about the miracles of Jesus Christ, especially of the man healed of the palsy, and wondered if anything so grand could happen for our little baby.  We mustered up our faith and decided to ask for a miracle.  For our baby to be healed.

Even though the recent ultrasound still showed a growth on Babygirl's nose, and while we are still uncertain of her health conditions, I feel that a lot of miracles have taken place already.  One of those miracles is the restoration of hope.  After that dark day I didn't have as much joy in her movements, but now I feel so much happier when she moves around.  Even more than before we knew she had any problems.  Now each push, flip, hiccup, and kick (even the ones to my bladder) fill my heart with the sweetest elation and hope that everything will be ok after all.  That is what makes the restoration of hope such a great miracle.  It teaches me that even when things could potentially be worse I feel confidence and faith in a Heavenly Father who has everything under control.  If my husband and I didn't have that divine reassurance, we would still be worrying and crying over the unknowns that still exist.

I also know that miracles begin before we even ask for them.  That is how I feel about all the doctors and medical staff we have talked to recently.  These people have trained and prepared to bring miracles to people who need it.  So if our daughter's path leads to surgeries and special care, I know that miracles will follow because it has been in the works much longer than we have ever knew.

That is how I will know that all the miracles we have been praying for will happen (or have happened) even if the bump on her nose turns out filled with essential brain matter.  I have faith and hope that they will.

A More Comfortable Ignorance

For a while I've been wanting to post the 3D ultrasound pictures of our little girl, but after our meeting at Seattle Children's I am not sure the pictures show an accurate picture of what our little girl has.  Maybe I'll change my mind later, but for right now you all get to be completely unaware as the husband and I.

First of all, let me express how wonderful Seattle Children's hospital is.  And I am not just giving high praise because we didn't have to wait in the lobby for more than three minutes. Nor did we have to pay for parking.  Everything about the experience gave us more peace--despite the fact that there are still so many unknowns about our daughter' condition.

Our appointment was with one of the cranio-facial surgeons at the hospital.  She was upbeat, positive, yet deeply concerned about our worries.  We told her about the information we had received, and we showed her the 3D images we had.  She reciprocated by showing us the images taken at the MRI.  All we had from the MRI was the radiologist's prognosis that the bump was an encephalocele, and the root of our biggest concerns.  As if looking down on her head, the surgeon showed us her brain in layers.  The varying layers confirmed what I stated in the last blog: that babygirl's brain appears to be intact with all the important parts where they should be.  This is important, because it shows that nothing important is being pushed into the mass on her nose.  If there is any sort of brain matter in there, it wouldn't be anything essential.

Additionally, the MRI pointed out that the mass was not protruding from the center of her nose; it is actually forming on the right side of her nose.  The 3D ultrasound images are confusing in that respect, because they make it seem that the bump is directly on top of her nose.  Most face-formed encephaloceles are directly in the middle of the face/nose area--like what we see in the 3D images.  The MRI is a little bit more accurate, and the bump is definitely coming from the side.  Fortunately, it doesn't seem to have affected her eye position, and hopefully her vision will not be drastically impaired because of it.  

So, we almost have a new prognosis.  I say "almost" because nothing can be confirmed until this little baby makes her appearance.  But we do know that we need not settle on the encephalocele diagnosis.  The surgeon stated that it could still be a number of things, and that--once again--we won't really know anything until she is born.  This means I may have to come up with a new blog...

I know that my husband and I would like to know officially what we are dealing with.  It is easier to plan things when one knows what to do.  Fortunately, the surgeons in the cranio-facial department at Seattle Children's do have a plan.  The doctor we spoke to is not the only one who knows about our daughter's condition.  The other cranio-facial surgeon, plastic surgeons, neurologists, and ENT surgeons ALL know about her case and have a plan.   The first issue will be her breathing.  If she can't breathe then the ENT will be first on the scene.  If she can breathe fine, then the plastic surgeons will take the lead followed by the cranio-facial, and then neurologists...  Anyway, needless to say, we have a large handful of very capable individuals prepared to help us.

There is something very comforting knowing that so many doctors know our baby and are already making plans for her before she even comes out.  It has brought so much peace to our minds.  Add to that the "knowledge" that her condition may not be as bad as we had been previously told.  While we may not have been overjoyed to the point of doing cartwheels, neither my husband nor I shed any tears of grief during our appointment.  We even felt comfortable enough to walk around the hospital for a bit afterwards.

And we are both able to once again feel the joy that comes with anticipating our own baby, but also the babies so many friend's and relatives are expecting.  Slowly but surely, we are healing.

Passing the Time

On Wednesday, my husband and I actually walked away from a doctor's appointment without a zombie-like demeanor or tears running down our faces.  This is not to say that no tears were shed on my behalf during our appointments.  The minute our ultrasound began I was wiping away tears even though it was a basic-making-sure-all-the-vitals-are-working type of ultrasound.  Maybe I'm a little shell shocked.  We did get a good look at her cute little foot though...

I next cried at our appointment with a social worker.  The social worker acts as a nice liaison between us and the myriad of doctors/specialists that we get to talk to. She also acts as a counselor, making sure that we are coping okay.  Although I feel that on the whole I am doing well, I did break down a little when asking about the NICU. One of my bigger worries is that our little baby won't be able to breathe, and that she will  get whisked away before I have a chance to see her.  The social worker assured me that the nurses will do everything they can to make sure I can see her and have her lie on my chest while I am getting all stitched up.  And when I am all done I will be wheeled directly to the NICU.  That was reassuring.  Next week we will actually get a tour of the NICU.  Besides the social worker, I am glad to know I have friends who have gone through the NICU experience, and a friend who works as a nurse in the NICU.  You will all be hearing the rest of my questions shortly. 

Today is another important doctor day for us as we will be meeting with the cranio-facial surgeon at Seattle Children's this afternoon.  We are really looking forward to meeting the doctor and getting more information about our little girl's prognosis and future.  I will be bringing tissues--not just because I am expecting the worse, but because just reading about the hospital on its own website caused a minor breakdown.  I would like to blame it all on pregnancy hormones, which may play a minor part, but the rest of the blame goes to uncertainty and worry.

Really, I don't cry all that often. Most days I pass the time tidying, looking at pinterest, eating sweets, and playing classical music for babygirl.  She really seems to respond well to Chopin.  Today we are trying out Dvorak, and she is moving around a lot to that too. 

And just a little FYI, you may start seeing Google Ads show up on the blog.  I don't really want to profit off of my daughter's misfortune's, but somehow we have to pay for all of the hospital parking fees.

To Know or What Not to Know. That is the question

During these past few weeks, my husband and I discovered that we deal with mourning in two entirely different ways.  I tend to recover quickly by grasping on to the little things I do know, and then telling myself that everything else will be okay.  This helps me move on, but as I've discovered during this process is that it hasn't fully prepared me for more bad news.  My husband takes longer to feel at peace because he tends to focus more about things we do not know...the things that could be a lot worse than our doctors are/aren't telling us, and he worries and feels depressed about the unknowns. This is not to say that I don't feel sad or worried about things we don't know.  I tend to worry about when we can take her home or if we will be able to hold her after she is born.  He worries if she will be a vegetable (for lack of a more sensitive term that I'm sure exists, but I can't quite think of it.) However, because he has thought about all sort of terrible scenarios, he is much better at asking the doctors questions.  I can usually wait until the next appointment for news (and hang out in my happy optimistic place), but my husband will call up our doctors for answers he needs.

We were instructed not to turn to the internet for information about the Encephalocele.  I would recommend that advice to anyone diagnosed with any foreign ailment.  Instead of just doing a broad Google or Bing search, we were advised to go straight to the children's hospital websites for the most accurate information.  This is not something we did right away.  I was way to scared to leave my happy place and learn anything more horrible than the news we had just received.  But eventually we looked up those sites because my husband was having a tough time dealing with the lack of knowledge we had.  I'll put some links to the side so you can read up on our daughter's diagnosis.

So now here are some things we know, and also the things we won't know until she is born.

We know that we will have ultrasounds every two weeks until she is born.  Pretty soon we will know the date as the doctors want to due a planned C-section to make sure her nose does not get ruptured in the birth canal. We don't know if she will be able to breathe through her nose.  And if she can't do that, then she can't eat...this is leading to her spending her first days on earth in the NICU.

We do know that an encephalocele happens in one out of every 10,000 births, so it's not very common. They normally  happen if the parents have a family history of spina bifida or anencephaly--which we don't. As I mentioned in the previous post, I had an amniocentesis to determine if the encephalocele was chromosomal and if she had any other syndromes attached to this defect.  We finally have all of the results back, and we can very happily say that her defect is not chromosomal nor does she have any other syndrome.  This boosts her chance for a successful recovery, and it means we won't likely pass it on to her future siblings.  This is just a random defect. 

An encephalocele can either happen on the back of the head or in the sinus area, like the one our babygirl has.  The good news is that usually the ones around the nose have a higher chance of survival and successful recovery after surgery.  Babies born  with fluid-filled encephaloceles have less developmental issues than those whose tumors are filled with actual brain matter.  What we do not know is what our babygirl has.  We won't find out until our consult with the neurologist, or until she is born.

Our OB recently reminded us that previous ultrasounds have shown that her brain is symmetrical, so that leads him to think that the encephalocele is just fluid.  You can't imagine the world of good that reminder did for our spirits. My husband and I have felt so much lighter and calmer after hearing that.  I have tucked that news into my happy place.      

The doctor also put her nose defect into a better perspective for us as well.  If it hadn't been for her nose, we would have never have had an echocardiogram, and we would not know about her heart defect. 

We do know that we are surrounded by loving family and friends, and a supportive medical team.  It helps us to know that we do have people out there rooting for us and our babygirl.  I know she feels it too.  She has been so active lately, it makes me a very happy mama.

Opening the Door to a New Reality

The MRI was probably the most enjoyable test.  Mostly because I was so drugged up that I slept through most of it--waking only when I had to hold my breath.  Plus my dreams were all sci-fi--probably due the spacey nature of the tube.  Waiting for results were not as fun. At least with an ultrasound, I got to see images as they were being made.

A week after our follow up ultrasound, my husband and I headed to Seattle for a marathon day of appointments, tests, and MRI results.  At 10:30 we started with the echocardiogram--an ultrasound specifically for the heart.  I wasn't quite sure why we needed it.  Nothing abnormal with her heart showed up on past ultrasounds, so I only prepared myself for a routine echo to rule out bigger problems.  After all, I still held on to the fact that her nose defect would be an easy fix.  After looking at her heart at all angles, the cardiologist came in to show us the defect in my baby girl's heart. She has a hole in her heart that is technically referred to as a Subaortic Ventricular Septal Defect (or Double Outlet Right Ventricle).  This means that when her heart pumps, oxygen-rich blood mingles with oxygen-poor blood before the poor blood travels to the lungs.  This defect will cause her to tire out easily especially while feeding, rapid breathing, and could delay her growth.  Fortunately, it is one of the easiest defects to fix, and can be done at six months with one operation.

That last tidbit of info didn't sweeten the news that my baby has another defect.  Isn't one enough?  I wasn't prepared to hear the news.  I had no tissues, and spent most of the explanation time wiping my eyes and nose, and trying to stifle sobs.  Thanks to the nice drawings the cardiologist made I wouldn't be able to tell you a thing about it.

In stunned silence my husband and I ate our lunch.  It was a quick lunch before our 1:00 appointment, and I think we benefitted by not having time to talk.  There wasn't much to be said that wouldn't result in tears.

Our next appointment was the one that was supposed to tell me that our child's nose would be an easy fix.  One quick surgery after birth, and she would have a normal, healthy life.  And after the recent-shock I needed to hear it.  And perhaps our OB felt the same way, but instead with much gravity he explained the results of the MRI.

He began by explaining that his first opinion was that we had a simple defect.  But the MRI showed that the bump was actually made of neural matter.  And he gave us a fancy name that I could not remember or pronounce when we left the hospital.  He obviously thought that my husband and I were medical students because he threw a lot of terminology and explanations about chromosomes and syndromes that I could not repeat to you if I tried.  In more layman's terms he explained that the defect--encephalocele--was like spina bifida, where the body doesn't close around the spinal cord.  An encephalocele is found on the head where the skull doesn't close around the brain.  They can happen at the base of the head, or in the sinus area--which is where our baby's defect is.

What does that mean?  This is a very important question to ask when getting crazy medical information.   It is a question we will be asking for a long time even after our baby is born.  That day our doctor gave us two meanings depending on the chromosomal nature of the defect.  Depending on any existing chromosomal anomaly our baby could either die soon after birth or will need extensive surgeries.  After hearing about all she would need, I wasn't quite sure what the worst case scenario was.  Losing a baby sounded harsh, but subjecting her to a life of struggles and pain didn't seem all the great either.  Tears flowed easily and sobs were uncontrolled.  Everything sounded strange, new, and so foreign to the words I had programmed in my head to hear that day.

After the earth shattering news, I was prepped for an amniocentesis to find out if she would live, and to check for other possible syndromes.  This will all help in determining her care after birth.  After the news that day, I can honestly say that perhaps I was not mentally ready for the amnio.  For one who hates needles, this is the last thing I would ever volunteer to do.  In a way I did volunteer for it--all for the sake of valuable information.  If it wasn't for my fabulous husband, who encouraged and coached me through it, I probably would have demanded that the doctor stop.  For those of you who have never had the joy of an amnio, sticking in the needle isn't as bad as the pain when uterine muscle contract and pull on the needle.  In addition you have 24 hours of fearing that you could go into early labor because of it.  The doctor and nurse retrieved three vials of amniotic fluid, and when they left the room I let myself sob again.

The most relaxing part of the day was when a nurturing, grandmotherly nurse hooked me up to monitors for a Non-Stress Test.  I got to lie down and process my thoughts.  There were lots of tears from both me and my husband.  Lots of worry about the future.  But it was nice to lay down and see my daughter's healthy heartbeat (despite the defect) and her movements.  It was nice to relax, but that peaceful feeling quickly escaped as we shuffled to our car. After six hours at the hospital.

There were no good thoughts to be had.  We cried.  I felt pain every time my baby moved.  And I when I thought that I could lose her I lost all joy in her movements.  We have since learned the results of part of the amnio.  The good news is that she should live, and can have surgeries to fix her brain and nose.  However, we don't know if she has any other syndrome (we should find out in a week), and we do not know if this will happen to any of our future children.  Once again we have more information, but we still know nothing.

Let the mourning, coping, and understanding begin.