Zoe Update

Thursday was quite the day of appointments.  I started out with a fetal echo with Dr. King, Pediatric Cardiologist.  I was most nervous about the fetal echo because of the change in diagnosis that he found at my last appointment. Good news!  Baby is stable and no changes have occurred.  Since I am 34 weeks now, it was difficult to see clearly as opposed to prior months when she was smaller, but with the help of the fabulous ultrasound tech, they were able to see everything that they needed.  To my surprise, Dr. King does not need to see me for the rest of my pregnancy and will be on standby during my c-section, the morning of April 11th.  Zoe is currently 5 lbs and 6 oz.... still has a big noggin' and is very active!  I was able to get some more 3-D images but she is so squished in this belly of mine, that they are more disturbing than adorable.

My next visit was a consultation with Dr. Paige Larrabbee, Neonatologist in the NICU where Zoe will be monitored prior to her first surgery.  Meeting with Dr. Larrabbee was very emotional, and I wasn't expecting to feel the way I did.  She was very blunt and factual about what to expect, which was hard to hear... but necessary, as she answered some of the questions I was afraid to ask.  One of the first facts that she pointed out was that 65% of babies with Hypoplastic Left Heart survive to 5 years old, even with surgery.  That is 35% that don't survive past 5 years old, even with surgery?  Wow... that was when the tears started flowing.

As opposed to what the Cardiologist had told me in the past, Dr. Larrabbee said I would not be able to hold Zoe after birth and that if anyone, it would be Andrew for a very short amount of time.  After baby is out, she will be taken to a small room off of the operating room, where they will then determine how severe her condition is.  They will then start IV lines and possibly oxygen if needed.  The Prostoglandin will be given, which is the temporary medication needed to keep her heart functioning until surgery is performed.  Dr. King had mentioned that if her condition is more severe, they will do the surgery on Friday, April 13th and if she is stable and doing just fine, they will wait until Monday, April 16th.  As opposed to Dr. King's estimate of a post-op hospital stay of 2-3 weeks, Dr. Larrabbee said 4-6 weeks.  I'm sure they are just preparing us for the worst case scenario, and at this point I need to stop thinking about quoted specifics as things could change for the better or worse, very quickly.  Dr. Larrabbee also took me on a short tour of the new Randall Children's Hospital.  I was able to see the operating room where my c-section will be performed and the room Zoe will be taken to immediately after birth.  I walked the halls of the NICU, where each baby is nestled in their own individual room.  This was probably this most difficult part of the day, as most every baby in the NICU was laying peacefully in their warmer but without any family.  It is unrealistic to think that families can be with their new baby 24/7 but it aches my heart to think of Zoe in discomfort and fighting all alone in a hospital room.  I plan to be with her as often as possible and am relieved that the private room is so spacious, with a bed, recliner and access to lots of amenities for families... such as, a gym, play rooms for siblings, a kitchen and much more.  I feel comfortable bringing Lulu with me most of the time as I think it will be healthy for all of us to keep her involved as much as possible, rather than shuffled from home to home without her parents.

Now, Zoe will only be in the NICU for 2-4 days prior to surgery and then she will be transferred to a private room in the PICU.  The NICU rooms are spacious but the PICU rooms are twice as big!  They include beds, food for nursing moms and the same amenities for the family.

As for visitors, Londyn is the only child that can visit Zoe because she is a sibling under 16 years old.  We can also provide a small list of family members that can visit her but only when we, the parents are present.

Dr. Larrabbee also assured me that Dr. Iguidbashian, Cardiothoracic Pediatric Surgeon is the best of the best.  She said that Dr. Iguidbashian is often commuting from Europe where he does surgery and if for some reason he is not Zoe's heart surgeon, it would be Dr. Hovaguimian, who is also a Cardiothoracic Pediatric Surgeon and is very good.

After this emotional consultation and tour, I finally met with my last doctor of the day, Dr. Merrill.  He is such a gem and really made me feel better about everything.  Dr. Merrill is my Perinatologist and co-cares for my case with my Obstetrician, Dr. Flath.  Dr. Merrill is always so real, and basically just sympathizes for me and my situation.  He offers an open ear and a warm disposition.  Like the Cardiologist, Dr. Merrill does not need to see me again until delivery.

As much as I have wanted to get this show on the road, I am now getting nervous that time is really of the essence.  I have 5 weeks to live a life and be in a place that will never be the same again.  In 5 weeks, I will be a mother of two and Londyn will be a big sister.  In 5 weeks, I will lay on a table and have major surgery for the first time.  In 5 weeks, my daughter will have a congenital heart defect and undergo the first of many open heart surgeries.  In 5 weeks, my entire life will change forever.

I have a choice to make right now.  Do I freak out and panic because my life is about to be tossed upside down and I have never been a friend of change and the unknown... or do I remain calm?  Do I change diapers, fold laundry and try a new crockpot recipe... all while knowing that the countdown has begun?  Do I crawl into my bed, shutdown and neglect my daughter and husband?  Do I let fear win?  Absolutely not.  My faith and family cannot afford for fear to win.  Zoe cannot afford to let fear win.  All I have is hope and my family.  Regardless of what happens, I believe in miracles and I believe in the grace of God.  His tender mercies are upon us each and every day.  Prayer has never been such a reliable source of comfort in my life as it is right now.  So that is what I do.  I hope and I pray, love my husband and cherish my daughter.  Because that is all I can do.


plpamlee@gmail.com said...

that was an emotional read to say the least and my heart was in my stomach the entire way.. this is something to think about... did you ever consider that Zoe chose you as her mother because you are the best mother she could possibly choose for her challenges..even though you are not one for change, I understand exactly where that comes from because I am that kind of person as well, she has chosen you and your hubby to be her parents and Heavenly Father has trusted you to be as well. Just as always put your trust in HIm and all will fall into place no matter what may come.. My heart goes out to you and your hubby and my prayers will always be on my lips in your behalf.. God's speed

Catherine said...

Kacie, you are so strong. This is a very difficult time and I admire you for remaining so faithful. I will be praying for your family in the coming weeks.

One thing I would suggest is to ask your doctors about kangaroo care and see if they would allow that for you - it's skin to skin contact for preemies and NICU babies, and it's research proven to help babies.
"The benefits of kangaroo care are numerous: The baby has a stable heart rate (no bradycardia), more regular breathing (a 75 percent decrease in apneic episodes), improved oxygen saturation levels, no cold stress, longer periods of sleep, more rapid weight gain, more rapid brain development, reduction of "purposeless" activity, decreased crying, longer periods of alertness, more successful breastfeeding episodes, and earlier hospital discharge. Benefits to the parents include "closure" over having a baby in NICU; feeling close to their babies (earlier bonding); having confidence that they can care for their baby, even better than hospital staff; gaining confidence that their baby is well cared for; and feeling in control—not to mention significantly decreased cost!"