Sunday, May 17, 2015

An Update on Zella

Being the fourth child, Zella has probably been ignored the most in her first four short months here on earth out of all our kids.  She takes it all in stride, however, and really enjoys watching and listening to her older siblings fight play.

On Monday, May 4th, three days before I turned 30, I took Zella to her 4 month well check at her pediatrician's office.  I had a couple of questions to ask about some strange things we had seen and Jake was kind enough to email me a list, so I wouldn't space out and forget.  Naturally it was shorthand doctor-speak...errr...awesome.  So when the doctor came in, I rattled off the list and handed Zella over, fully expecting her to say "nah, no worries here."  Much to my surprise, our pediatrician was also slightly alarmed at some of the same things Jake had noticed.

Primarily we noticed that both her eyes seemed to dance back and forth horizontally whenever she would try to focus in on something (nystagmus).  I had also noted early on around the 2 month mark that each of her pupils were slightly different in size (anisocoria).  And lastly, she seemed to have a lazy eye that continued to persist beyond three months, causing her eyes to look crossed (strabismus).  Technically a couple of these things can be fairly normal and harmless, but Zella's nystagmus was really what concerned both Jake and her pediatrician.

Our doctor made an appointment with a pediatric ophthalmologist for two weeks from that day, the earliest available time, and consulted with a neurologist about her case in the meantime.  The pediatric neurologist thought it would be worth it to also order an MRI just to see exactly what they might be dealing with.  We were *very* lucky to have an MRI opening come available due to a cancellation two days later, and so we took it.  Her doctor also ordered an ultrasound for the following day to rule out any abdominal masses, which might be a sign of neuroblastoma.

The ultrasound went well and our doctor called us with the results that same afternoon.  No masses!  We still didn't have any answers as to why she had these slight eye abnormalities, but we knew it was important to continue ruling things out as quickly as possible.

The next day she went in for the MRI, which was tolerable, but not great for Zella as they needed to put her under general anesthesia in order to administer the test.  This meant nothing to eat for over 6 hours, and clearly she wasn't thrilled about that.  We got the MRI results back 48 hours later and were very relieved to see that again, there were no masses.  The radiologist did, however, find something strange.

On Friday, May 8th we were told by our pediatrician that the radiologist had noted mild to moderate widening of her ventricles, not caused by hydrocephalus.  He mentioned that this thinning may have been caused by some sort of "insult" to her system.  The current theory is that while in utero, whether early in the pregnancy or during labor and delivery, there wasn't sufficient blood supply to part of Zella's brain.  There is no answer as to why this happened or when exactly it might have occurred, but the results show that *some* of her brain tissue became necrotic and died as a result of this insult.

This was a lot for Jake and I to take in.  I know...understatement of the year.  We don't yet know her prognosis, because as with many things, it is a "wait and see" deal.  At minimum, she might be completely unaffected thanks to the plasticity of children's brains.  At maximum she may get a cerebral palsy diagnosis sometime between the ages of 3 and 5.  We have no idea.

The craziest part of all of this is that Zella's nystagmus, the reason for all of the diagnostics, can not be explained by this insult and subsequent widening of her ventricles.  The neurologist believes that the two issues are completely separate.

This past week we took Zella to the pediatric ophthalmologist where he asked us how well we thought our daughter could see.  I mentioned that compared to the other three kids at this age, she doesn't seem to be able to focus in on your face nearly as well.  He told us he agreed that her vision is definitely diminished.  It was then that he dilated her eyes and examined the retinas.

The ophthalmologist found that Zella doesn't have an adequate foveal pit, a condition called foveal hypoplasia.  Generally this is associated with albinism and ocular albinism, hereditary conditions that do not run in either of our families.  Zella will have "mild to moderate vision impairment that can not be corrected with surgery or corrective lenses," the specifics of which we will not know until she is of an age where she can tell us what she is seeing (age 2 or 3 or even older).

The foveal pit essentially seems to control/facilitate our vision acuity and how well we see fine details sharply.  I have been told that Zella is most likely seeing everything similar to how we might see things in our peripheral vision.  It is sad for us to contemplate Zella not seeing everything as clearly as we do, but I know that she will never see it that way as this has been the only way she has ever looked at the world...a blessing in and of itself.  I also wonder if she will be able to read music and be in an orchestra, go to a regular school, or even drive one day.

For now we wait and watch with the help of pediatric ophthalmologists and neurologists, but mostly we pray.  We pray that the great physician will heal Zella while here on earth, if it is in His will.  We also hold firm in the knowledge that Zella and all of us will be made whole one day in eternity.



Wednesday, May 13, 2015

The (Long) Story of Zella's Dramatic Entrance

Miss Zella Celeste wasn't due to be born until 2015, but when I headed in to my doctor's office on the morning of December 22nd for my 37 week check up, we found that she would be making her arrival sooner rather than later.  Without being graphic, essentially the doctor found that I was at risk of her falling out of me (perhaps that *is* graphic...I tried.)  Because of my "spontaneous-water-breaking-prior-to-contractions" history, the doctor was slightly concerned about the possibility of cord prolapse.  This had never been a real fear with the other kids, but the fourth kid's positioning was different and thus it made us stop and consider all possibilities and outcomes.

Our amazing doctor gave me her cell and told me to talk it over with Jake.  If we wanted to we could head to the hospital after dinner that evening, as she would be on call, or we could wait it out at home (estimating I wouldn't last much longer than 24-48 hours or so based on progress).  On the drive home I called Jake, explained the situation, and he agreed that the safest, least emergent decision was to head to the hospital that evening.  I then called mom in Greensboro and she began her trek up to Nashville to watch the kids.

Knowing I was heading to the hospital for an induction in a few hours was surreal.  And crazy.  But the OB was correct in her estimation and I started having sustained contractions prior to arriving that evening.  We checked in and waited for a bed to open in L&D...for 2 hours.  And the best part?  We had the pleasure of sitting with the world's loudest teenagers who were ticked that they had to wait on their friend's new arrival.  I was also mad at them for them.

Finally someone decided to deliver (and no, sadly it was not the teenagers' friend) and thus a bed opened for me.  They hooked me up to a monitor and IV, gave me an epidural, and we waited for the next step.  This was when things began to change...

Initially Zella's heart rate was difficult to detect and keep steady on the external monitor.  Similar to the other kids, she enjoyed moving all around and dodging it at all costs.  We chased her around for an hour or so and then the OB came in to update us.  She didn't like that the heart rate was elusive and also felt like there might be a slight arrhythmia.  We opted for an internal monitor, which I thought would certainly "fix" the problem.

Internal monitors are awesome...not really.  They screw it into your kid's head.  Cool, right?  Yeah.  So understandably Zella did a big "WTH?!" when they did this and managed to shake the monitor loose.  Our OB was unfazed and put another one on her, and this time it stuck.  But instead of solving our monitoring issue, we began to see the underlying problem.  Zella had a heart arrhythmia that was becoming progressively worse as I labored on.  She was experiencing extra beats thrown into her normal rhythm, thus causing her heart rate to shoot into the 300s for short periods of time.  There were also other periods where the heart rate seemed to disappear entirely.  Without the ability to blame it on her dodging the external monitor, we became worried that she might be in distress.

Our OB allowed me to labor longer, but she warned me that if this didn't settle down, she would have to come in to talk about other "options."  I knew this was a euphemism for a Cesarean section, and at this point I still refused to believe that it would come to that.  After all, a) this was my FOURTH kid, b) I have a history of precipitous labors, and c) I was already 75% of the way there.  Surely I could get this truck in gear and have the kid in the next 20 minutes.  No need for an incision, thanks.

Fast forward a few minutes longer (no concept of time - could have been 5 minutes or an hour).  Our doctor came in one last time and was looking worried, to say the least.  "I really can't guarantee anything from this point forward given what we are seeing on the monitor."  She went on to explain that the neonatologists had also been watching at the nurse's station and agreed that a Cesarean was the only rational option.

I wish I could say I was strong, but I was completely silent as they prepped me for the OR, tears streaming down the sides of my face.  My OB kept apologizing over and over, but I told her it was certainly not her fault, this was just how it would have to be.

The Cesarean was everything I thought it would be.  Not good.  My left side is never fully able to be numbed, and so there was quite a bit of breakthrough pain as they sliced through layer after layer. My doctor was great, however, and stopped multiple times so they could push more and more meds.  By the end of it I was just trying not to fall asleep.  Zella came out screaming (more like gurgling as she was pretending to drown, oh the drama).  Our doctor allowed us to announce the gender once we saw she was a girl.  I was completely out of it and remembered thinking "Wow, it is so awesome that I'm not crazy nauseous and throwing up right now."  Typical emetophobic.

Zella had great Apgar scores and weighed in at a hefty 7.5lbs, fairly huge for a 37 weeker.  She nursed immediately and had her posterior and anterior tongue ties clipped within 12 hours of birth by an amazing Vandy ENT doc to whom I am forever indebted.  Her arrhythmia persisted for all of about 3 months, and then she was cleared by the cardiologist/electrophysiologist for regular newborn well checks and no more trips to see him.  We still have no idea what caused the arrhythmia or when it began in utero, and I suppose we will never know.

Through the ordeal, we could see God's hand moving.  And now as we look back on her birth, we know He was using the experience to begin to prepare us for the wild ride that will be parenting this very special little girl.

Saturday, April 18, 2015

The Dreaded Four Month Sleep Regression

I love when I hear people everywhere (namely great grandmothers in Publix) talk about how Zella is currently at their favorite age.  Clearly quite a few drinks have been consumed between when they were raising a 4 month old and the present day.  I just can't agree, so I nod and smile thinking "why don't you take her for a while and give her back at the 6 month mark?"

Every one of the kids has gone through a 4 month sleep regression of sorts.  Zella has not skipped this phase either, but she happens to have regressed in a far more horrible way.  Where many kids, if not most, wake up in the middle of the night, eat, and then fall back asleep within some fairly short period of time, Zella has decided that is just not her jam.  She sleeps for long stretches, which I am thankful for, but I dread the moment she wakes to eat.

I'll feed her, rock her, do anything I can to get that child to go back down, but the second you think she is asleep and you try to place her really anywhere...cradle, Nap Nanny (what recall?), rock 'n play, bouncer, swing, Rockaroo...BAM!  She is wide awake and shrieking.  At this point it typically takes anywhere between 30 and 90 minutes for her to fall back asleep.  Did I mention that during this duration of time you absolutely MUST be standing?    Yes.  Zella knows nothing good can happen when someone is sitting in a rocking chair while holding her.  Standing is apparently the only way to go.

I am over it.

The end.



Thursday, April 16, 2015

Our Offer Has Been Accepted!!

After what seemed like an eternity (but in fact was actually only about 48 hours, tops), our offer on a gorgeously designed custom home in Augusta has been accepted by the sellers!  Praise the Lord!  We are so thankful to everyone who has helped us out along the way.  Our parents, families, and friends have been awesome, doing everything from scouting locations to giving real estate advice to keeping our crazy children at a moment's notice.  THANK YOU!

Here are a few pictures of the new place...now all we need are some visitors :-D

Front of Home

Kitchen

Outdoor Kitchen

Backyard and Playset