Halloween vs All Saints Day

"Our willingness to wait reveals the value we place on the object we're waiting for."

Charles Stanley

 

I'm still pregnant as of 10:39pm. 

 

Brian and I arrived at the Northwestern campus at 8:30 am.  We stepped off the elevator just in time to run into an old coworker turned PICU nurse who is blessed with the happiest smile in the world; just another cozy element of this hospital.  After a quick hug and catch up, we went our separate ways and Brian and I headed up to the 14th floor for what was likely our last time before the arrival of the baby.  

 

By this point, the receptionist knows who we are and checked us in right away.  Two shakes later, our angel, Linda, collected us for the NST (fetal non-stress test).  Once again, baby was moving and grooving, so we were able to focus on catching up with her about our weekends.  Linda's daughter has just moved to England to live with her new husband and this was their last time together.  She expressed how tough it is going to be to have her child live so far away and she wouldn't wish it on any parent.  I agreed; this is how Brian and I feel about our situation - we wouldn't wish it on any parent.  Unfortunately, it just goes to show that a parents' devotion to their child starts even before day one and never stops; all we can do is love and support them during their journey, whether they are one day old or thirty years old.   

 

After the test was over, we were ushered into the examine room.  The same medical tech from Thursday took my vitals and I gave Brian "the eyes" of encouragement to keep his thoughts to himself until we got the results.  "122/80"  Phew - in the clear.  She wrapped up her standard questions and a minute later we were meeting with a different perinatologist than we had met with up until this point.  She cut right to the chase.  As of today, I'm 40 weeks and 1 day along and while many mothers to be can push the clock to 41 or even 42 weeks, considering the baby's CDH, the doctor wanted to ensure the placenta was firing on all cylinders during delivery.  Apparently, placentas (which function as the total life support for the baby, supplying nourishment and oxygen via the umbilical cord) age and start to lose functionality the longer a pregnancy continues past 40 weeks.  Therefore, they wanted the baby to be born before the end of the week; she asked if we had a preference as to what day I would be induced.  Knowing that this was an option, Brian and I both agreed that either October 31st (Halloween) or November 1st (All Saint's Day) would be great.  The doctor agreed that earlier rather than later was better, so we were all on the same page.  

The doctor did revisit my desire to have an intervention free labor and delivery.  She confirmed that every doctor hopes for a spontaneous labor because forcing our bodies to do something it isn't ready or wanting to do makes the situation more difficult and induction can take a very long time if your body isn't ready.  We discussed some more natural methods of induction and after a quick exam, we agreed to cross our fingers that the baby was ready to make his or her entrance today or tomorrow without additional assistance, but the induction would likely be scheduled for Wednesday; we should wait for the scheduling department to call us to confirm.  

In the meantime, Brian and I drove directly to the acupuncture clinic.  I had read that acupuncture is a common form of alternative medicine used for thousands of years to encourage the body to move towards active labor.  This was my first time experiencing acupuncture and I can honestly say it was fascinating.  The doctor inserted needles into my ears, shoulders, hands, shins and multiple places in my feet, including my arches and pinky toes.  I can't really explain some of the sensations (some points reminded me of licking a 9V battery) and who knows if it will work, but at this point, I will try anything to avoid the world of synthesized oxytocin.  Regardless, it was a relaxing and supportive environment. 

In an effort to remove extra worry, we opted to drop the dogs off at the dog hotel today to ensure they would be taken care of, but not before we drove thru McDonald's for some plain hamburgers to celebrate Marley's 14th birthday today!  Then we came home to rest, relax and wait...again.  I managed to fit in one more afternoon of work before signing off for maternity leave, double check my hospital bag, and take a warm bath.   We also spent some time tonight just holding hands and watching my stomach move... and laughing; I think this baby is going to be a runner like his/her dad.  Fingers crossed a restful sleep (and some extra dried dates... another natural labor kickstarter) encourages labor to begin, but if not, we will be checking in to triage again on Wednesday at 10:30 for a scheduled induction. 

Thank you so much to Dan and Stephanie Osten for the delicious (and perfectly spicy) dinner last night and for everyone's continued well wishes.  I want to apologize to everyone who I owe a thank you card...  I haven't forgotten and they are in the works.  I'm saving tasks for the NICU to keep my mind occupied.  xoxo

"Trust the wait.  Embrace the uncertainty.  Enjoy the beauty of becoming.  When nothing is certain, anything is possible." 

Mandy Hale

127/90

"Under pressure she became a diamond.  Under pressure she became unbreakable."
R.H. Sin

Thursday, October 26th:

I'll start with sharing that I have great blood pressure... normally.   

Our day started out very chill and we were both doing our best to dampen the looming anticipation of questioning what the day held for us.  Brian relaxed with the dogs while I worked from home until we needed to leave for our afternoon appointments.  We arrived at Northwestern about 30 minutes early (1:30p) for our fetal non-stress test and ultrasound, even after stopping for a latte.  Like the last time, the nurse strapped two monitors to my belly to track the baby's movements for at least 20 minutes.  The baby was having a dance party and we were done relatively quickly.  We proceeded back to the waiting room and shortly thereafter, we were called back for the ultrasound.  The doctor ordered this quick test to measure the amniotic fluid level - everything checked out fine.

Our final stop was back to the waiting area around 2:45pm for our 3pm appointment with the doctor.  During our wait, we entertained ourselves by scrolling through years of pictures stored in our Google photos.  Here are some of the hilarious outtake gems that Brian allowed me to post:

Say Cheese!

Amy and Nick's wedding with our best people

Pub life in Ireland - Take 1

Truly, this was pretty fun and made the time pass quickly... until the clock struck 4pm and we were still waiting.  Brian scooted up (he opted for a peddle scooter instead of the crutches) to the receptionist to ask what time we could expect to see the doctor.  She apologized and explained that it would only be a few more minutes.  At this point, we didn't really have any other choice but to wait and we loved the fact that our doctor took such an interest in his patients, even if it meant we had to wait our turn.  In the meantime, the medical assistant asked me to come with her so she could get my vitals while we waited; she also pointed out that it was the end of her day (aka I want to get out of here).  She recorded my weight, asked if I was having any problems and then took my blood pressure - it took her two tries to get my blood pressure.
"What's your normal blood pressure?" she asked.
"120/80" I answered very confidently.
"Well, you're 127/90 now."
This surprised me, but it had been a long day already, so I just chalked it up to lots of waiting and my emotional and physical state of 'hanger'.  Brian and I had planned on a fairly brief appointment, which would have allowed us to grab a very early dinner.  Therefore, I hadn't eaten a ton before we left the house.  Mistake.

By the time we finally saw the doctor, it was 4:30.  After a brief exam, the doctor confirmed I had slightly progressed since our last appointment, but not enough that he would want to move forward with induction, especially because the NST and ultrasound were good.  However, he was concerned about my blood pressure.  He explained that while he could possibly attribute my elevated pressure to many different factors (like a long day), it wasn't worth the risk that I had developed preeclampsia.  I concurred - I had no interest in ending up like poor Sybil from Downton Abbey.  So came the bomb - the doctor wanted us to go across the street to OB triage to be monitored.  If my blood pressure didn't decrease (or labs were outside normal range), they would induce me that night.  (Say what?!)  He also disclosed that it was going to be a tough task to convince the doctors across the way that I should be able to leave... he was doing his best to prepare us that we were going to have the baby in a few hours.

With this development, Brian started to question the accuracy of the original BP reading and if the tech was just in a hurry.  He had some choice words for the situation, which I won't repeat, but did say that if he had a stethoscope, he would do it himself #marriedtoanurse. He asked another nurse to try again, but to use a different cuff.  Apparently, cuff size matters and the smaller size the medical tech used could have skewed the results.  The second read was 122/86, but the doctor still wasn't satisfied.  So, off we went across the street to Prentice Women's Hospital.  Were we about to have a baby?  I didn't have any of my things!  I was starving - were they going to let me eat or drink? Probably not.  And what about my dogs???  Could Brian go home to take care of the dogs and get my hospital bag?  UGH.  This was not a part of the plan, but shouldn't we be prepared for this by now?  Question: You know what isn't good for reducing blood pressure?  Answer: Please review the previous questions.  Thank goodness for Brian who brought me back from the three steps ahead I had jumped; we needed to focus on one thing at a time.  We texted our amazing neighbor, George, and he was able to take Ali and Marley for a walk to buy us some time to hopefully bust out of triage prison.  

We checked into triage and were collected 15 minutes later by the charge nurse.  She reiterated the doctor's instructions - labs, fetal monitoring and frequent blood pressure reads.  For almost my entire pregnancy, I've been studying hypnobirthing.  This technique teaches relaxation, mental focus and meditation for natural pain management and it coupled really well with my love of yoga.  I knew I needed to get zen if I was going to have any chance of going home.  (insert slow, deep breathing) The first pressure read was already closer to my normal range, but we knew one time wasn't going to cut it.  So, there we sat for close to two hours watching Big Bang Theory and every time the blood pressure cuff kicked in, I closed my eyes, focused my breathing and went to my happy place (which wasn't on a skinny gurney in OB triage).  The final reads were roughly 118/65, so we got to go home (8pm)!  The nurse told us to call the maternal fetal medicine office in the morning to get our next steps.  

Friday, October 27th:

This morning, we called the office for our next instructions.  I was half expecting them to ask us to come back for induction, but the doctor called me back personally and explained that he wanted me to watch out for signs of increased blood pressure (swelling feet/hands, pain in my right side under the ribs, consistent headaches) and come back on Monday morning.  If this baby doesn't make his/her entrance this weekend, we will schedule my induction on Monday for one of the following days.  This put my mind at ease because 1) I would still have additional time to naturally go into labor 2) the baby would likely reach 40 weeks gestation and 3) I had one more opportunity to head into the office before I took leave.  My work has been exceptionally understanding during the entire journey and I adore the brilliant, compassionate people I work with.  Not to mention, if I'm physically able, it is hard for me to not work when I should be working. 

So, once again, we wait... We are looking forward to enjoying our last weekend as a family of two humans and two four-legged kids.   Life is about to get real.

"R-E-L-A-X"

Aaron Rodgers

Battening Down the Hatches

"And once the storm is over you won't remember how you made it through, how you managed to survive.  You won't even be sure, in fact, whether the storm is really over.  But one thing is certain.  When you come out of the storm you won't be the same person who walked in.  That's what this storm's all about." 

Haruki Murakami

We arrived at Lurie Children's Hospital at 7:45 am for a tour of the Neonatal Intensive Care Unit (NICU) where the baby will be moved almost immediately after birth.  The lobby at this hospital is adorable - definitely set up to inspire a child's imagination.  As we waited next to an oversized aquatic scene for our tour guide watching a three year old sprint past us wearing giant Incredible Hulk gloves, the neonatologist we met with a week and a half ago was coming in to start her day (unfortunately she had been caught in the rainstorm that was blanketing the city).  Brian and I didn't even notice her, but she made a point to come over and ask how we were doing.  As we were wrapping up our small talk, she mentioned that she was going to keep her eyes peeled for our names on the labor and delivery list and she would be sure to touch base after the baby was born.  This woman is one of 32 neonatologists on staff and it is unlikely that she will be assigned to our baby, but this brief interaction once again made us feel like the team at this hospital truly cares about the families they are working with.  Perhaps Brian and I have just been jaded by interactions with 'regular' doctors, and maybe all physicians focused on pediatrics share a softer quality that bolsters a compassionate bedside manner, or maybe this hospital just does an excellent job recruiting for an environment focused on cultivating comfort and healing.  I'll assume the latter. 

Shortly thereafter, we met with a pediatric nurse practitioner who our social worker had arranged to give us a tour of the NICU.  This unit is the entire 14th floor of the hospital and every baby has a private room equipped with a rocking chair, recliner, breast pump and lovely view.  While it was obvious that all the current residents were in need of special care, it didn't feel like a sad place.  The main area was bright and happy, but the rooms felt calm and serene.  It was helpful to see this place prior to our baby's arrival so we could 1) have a better idea of what to expect on a day-to-day basis and 2) meet some of the staff that would be taking care of our little fighter.  

After our tour, we crossed over to the Galter Pavilion for a fetal non-stress test and to meet with our perinatologist again.  The fetal non-stress test takes roughly 20 minutes and the goal is to measure the baby's heart rate during surges of activity.  One nurse explained it that if I was to run up a flight of stairs, the doctor wants to see an increase in cardiovascular activity to mirror that activity.  This is what they are trying to capture for the baby, but instead of stairs, the activity includes kicks and flips. As we waited for our name to be called, a jolly redheaded woman walked up to the reception desk, took a Tootsie Roll and then offered one to me and Brian, addressing us by our first names like we were old friends.  Apparently, this was who was going to be administering our test.  We followed her back to the testing room and she got me all set up (two monitors are strapped to my belly).  After some small talk, I felt bad that I didn't know her name.  "I'm Linda."  This was our angel.  The woman who Brian had initially talked to a few short weeks ago who initiated our transition from UIC to Northwestern.  This was the woman who ensured that we met with all the right people.  "You're the Linda?"  I couldn't help but get emotional and reiterate to her what she had done for us, how she injected comfort back into our lives when we desperately needed it.  I feel like I'm never going to be able to repay this woman for her kindness, so I wanted her to know how drastically she impacted our lives.  We spent the rest of our time together learning about her two daughters, one who was recently married and the other who was expecting her first child.  It was nice.  

After hugs with Linda, we went back out to meet with the perinatologist.  He walked into the room, with a medical student in tow, and immediately addressed Brian - he had just learned that Brian's injury was caused by marathon training and he himself was an avid marathoner.  The doctor looked at me and said with a big smile "I promise we will get to you, but I just want to talk to your husband for a minute."  They shared their war stories and he talked about how he initially hated long distance running, but had successfully completed multiple marathons (including Boston).  He reassured Brian that he would get through this injury and be back at it before he knew it.  Soon after, the topic of conversation moved back to the peanut in my belly and when we could expect a debut.  The doctor explained that if I was showing signs of labor, we would likely want to induce this week for a more control labor and delivery.  Induction when there are no signs of labor can be an arduous and unpredictable process.  Considering the non-stress test results were reflective of the baby thriving in my belly, the doctor didn't see any reason to rush the process and he reiterated that he was aware of my wishes for an intervention free labor and delivery.  So the plan was 1) if I was showing signs of labor, I would likely be induced in the next couple of days or 2) if I was showing little to no signs of labor, we would come back on Thursday to check again. 

After a brief exam, the doctor determined the baby was still comfy and it was best to be patient - we will wait until Thursday to reevaluate.  And so we will do our best to resume regular life for a few more days, anticipating our next appointment or for Baby B to decide it is time to come.  If nothing has changed by Thursday, we will discuss setting an induction date for next week.    

Roughly thirty-five weeks ago, our lives changed when we discovered we were going to become parents.  But three weeks ago today, I think Brian and I truly became parents when we learned this news.  We are no longer living for just the two of us; we are living for our child, for our family and to entrust this is God's plan for us.  This time has been terrifying, humbling, exhausting, hopeful and everything in between, but Brian and I have learned more about ourselves as people and as a couple than we ever thought possible, even after almost seven years of marriage.  And while we've had moments of complete and utter grief, we have made the decision to be strong and resilient for each other and for our baby - we will make it through this and we are doing our best to do it with joyful, kind hearts.  We will continue to use this forum as a means to thank all of you for your love, prayers and support.  Thank you especially to Lauren Garcia and Emily Vaccaro for arranging the meal train - we had our first delicious dinner tonight thanks to Karen and Patrick McNamara - baby approved.  

"Hope and fear cannot occupy the same space at the same time. Invite one to stay." 

Maya Angelou

A Lesson from Dory

"Joy lies in the fight, in the attempt, in the suffering involved, not in the victory itself"
Mahatma Gandhi

Today was the third and final meeting with our dream team: our perinatologist.  This particular OB has been practicing longer than Brian and I have been alive and, most importantly, he treated us like people and not like patients.  So much of the past two weeks have been focused on our child, but I appreciated that this doctor was very much focused on me, my health, and our wishes as a couple on how we envisioned our labor and delivery, while still ensuring that plan coincided with what was best for the baby. 

We discussed a few key topics. 
First, the doctor confirmed that I wasn't "old".  I'm not sure what made him bring this up, but I couldn't help but chuckle. During our first meeting with a doctor at UIC way back in February, I was told that I was considered a "geriatric" pregnancy because I'm 36 - yes, those exact words were used to my face.  This meeting is what solidified my intention to work with a midwife instead of a doctor.  I think that his intention was to establish that this wasn't my fault - nothing about who I was or what I'd done caused this situation.  Then he lightened the mood with a story of a 60 year old woman who opted to be a surrogate for her daughter and wanted to have a natural labor and delivery.   Prior to the birth, his nurse casually mentioned that if her son-in-law was present for the delivery it would change Thanksgiving dinner forever.  She ended up having a c-section (awkward visual avoided).

Second, the doctor moved my due date back from November 3rd to October 29th.  This was my original due date, but my previous provider pushed it forward after ultrasound measurements.  The doctor explained that ultrasound isn't always the best tool to determine a due date and he was confident that our baby's gestational age was older than currently thought. Therefore, I jumped from being 37 weeks and 3 days to 38 weeks and 1 day.  This is important because, as mentioned in a previous entry, we were told that they would likely want the baby to arrive around week 39.

Next, Brian and I were both curious if a c-section would be beneficial to increase the medical team's level of "control".  Up until two weeks ago, a c-section was my nightmare.  I spent months preparing myself mentally and physically to engage in a right of passage that my body was literally created to do: bring a child into this world.  Everyone has a right to their own opinion when it comes to their beliefs on this topic, but I wanted to a) experience childbirth naturally with little to no medical intervention and b) avoid major abdominal surgery.  However, when the health of my little peanut became the topic of every conversation, all well intended plans were off the table.  If the medical staff concluded that a c-section was the best option to compliment neonatology's plans, then I would do whatever it took.  However, this doctor echoed what the pediatric surgeon and the neonatologist expressed; there was no medical reason to justify a c-section unless the baby was in distress.  I know that I'm not anywhere close to a physician, but I was under the impression from a lot of research that there are many major benefits to a vaginal labor and delivery.  It was refreshing to have this doctor reiterate this impression. 

Finally, we discussed our next appointment in a week (39 weeks and 1 day).  If at that point my body and the baby are showing signs that labor is approaching, induction will likely be in our best interest to give the medical team a more accurate window of time to anticipate the baby's arrival.  However, he did ask Brian and I to think about this plan and encouraged us to bring questions for our next meeting along with our opinions regarding induction; if we wanted to wait for a completely natural labor, they would take this opinion into consideration when finalizing our care plan.  If I'm showing no signs of labor, we'll need to take it a couple days at a time.  So, ultimately, we will wait one more week before any further decisions are made... unless the baby opts to come earlier.  It's as if we are hearing the final clicks up the first big hill on a roller coaster - the initial drop is going to be gut-wrenching and we don't know what the rest of the ride will be like, but the anticipation is just as brutal. 

To add another twist to our current world, Brian has been in a cast for the last three weeks due to a stress fracture in his left foot caused by marathon training.  He met with his ortho today and, unfortunately, it was decided that he needed another three weeks in a cast.  Again, while this wasn't the news that we wanted to hear, we will get through this bump in the road, too.  His old cast was florescent green and when they removed it, he asked the nurse to cut out my name.  For those of you know about the famous green cast from 6th grade, today brought us full circle...she couldn't manage a heart, but I still didn't tear this one up ;)

"Just keep swimming."
Dory

The Darkness Before the Dawn...

 

“Your hardest times often lead to the greatest moments of your life.  Keep going.  Tough situations build strong people in the end.”

Roy T. Bennett

 

Thursday, October 12th:

We started the day with a level two ultrasound.  This is an in depth ultrasound that takes roughly 1-1/2 hours.  The sonographer measures all major bones as well as major organs (heart, kidneys...).  The pitfall with an ultrasound is that they can only see so much; the right side of the baby was furthest away from the surface of my belly, making it really difficult to get a good shot of the abdomen.   We met with a perinatologist afterwards and she explained that she wasn't able to see a diaphragmatic hernia, but she did see a mass that was roughly 3 cm x 4 cm adjacent to the heart.  She wasn't able to tell us much more, but explained that the MRI would likely be able to give a better picture of what was happening in our baby's body.

 

We didn't really know how to internalize this information.  Was this a good thing because she couldn't see a hernia or a very, very bad thing?  When I hear about the discovery of a "mass", my mind immediately thinks of the big C and Brian's mind went to the same place.  So, we just tucked that one in the back of our minds, hoping that we would learn more after the next test.  

 

We then went from Prentice Women's Hospital over to Lurie Children's (the facilities are connected by a bridge) so I could have a fetal MRI.  When I was changing from my street clothes into the fashionable hospital gown (Gucci Fall 2017 line), another patient, likely 4 or 5 years old, was being wheeled into a recovery space.  This little person was intubated and looked so small on the massive gurney.  I couldn't help but think of how scared and worried her parents must have been at that moment.  My heart broke for them in a new way.  

 

The MRI is the test when you lie down on a long bed and they slowly move you into a large tube.  One major benefit of being at a children's hospital is that they give you the option of watching a movie during the test; I picked Hunger Games (duh).  This crazy contraption makes the loudest, scariest noises and lasts about 45 minutes to an hour.  When it's all said and done, it basically takes an insane number of pictures that are like slices of your body, allowing for a much clearer view of the baby's whole anatomy.   After the test was over, we were able to leave for the day and we were both drained... but our minds were still racing with so many questions, especially with the introduction of this possible unidentified mass.  Tomorrow was the big day.

Friday, October 13th:

Our day started back at Prentice Women's Hospital for a fetal echocardiogram.  This is another kind of ultrasound that focuses specifically on the baby's heart.  Because CDH is a congenital issue, there are often other congenital defects that can be present, namely in the heart.  Once we registered, we were given a piece of paper that we were instructed to hand to the doctor when our name was called.  During the level 2 ultrasound, the only diagnosis listed was CDH, however this paper listed hypoplastic heart syndrome.  This was a bad thing to see.  Ultimately, hypoplastic heart syndrome is a rare congenital defect that results in an underdeveloped heart, missing a chamber.  The only options for survival (that we determined from a quick search) are very invasive surgeries and/or heart transplant.  Our hearts sank.  Is this also something we are about to face?  

 

Our name was called and we met with an attending cardiologist who would be performing the test.  Brian mentioned the hypoplastic heart syndrome to her and she confirmed that the CDH was the only diagnosis that she was aware of, but she would definitely be checking all chambers of the heart to verify growth.  She was very vocal about what she was seeing as she performed the test.  This was very comforting because basically everything she had to say was "normal" or "within expected range".  Our baby has a healthy heart (YAY!) - this was the first piece of really good news we had received in the last week and a half.  

 

After the echo concluded, we went back to Lurie Children's to the Office of Fetal Health to meet with a social worker prior to our meeting with the care team.  This was actually a very therapeutic experience.  The social worker expressed Northwestern's concern with not only our baby's health, but our health as well.  We were able to discuss what brought us to the hospital, our mindsets, health histories and expectations.  She gave us a little bit of insight into life in the NICU and challenges we could expect to face, but resources they would provide to help us navigate this difficult time as smoothly as possible.  The social worker then left to check on how the team was getting along with reading all the test results... and then it was time to learn how all the pieces of the puzzle were fitting together. 

 

Brian and I moved into a small conference room with the social worker to meet with a neonatologist (a pediatrician who specializes in the care of infants) and the pediatric surgeon.  This specific surgeon was the person who we had read about when initially determining which facility to proceed with; his credentials were beyond impressive and it was very comforting to be in private audience with such a skilled professional who wanted to help us.  The first thing the doctors did was thank us for coming to Lurie and entrusting them with the care of our child.  This really blew me away - I had never had a medical professional thank me for seeking them out and it really set the tone for the meeting.  I think Brian and I could tell that these people were on our side and they were going to do everything possible to set our child up for a normal, healthy life.  We met with this team for roughly 45 minutes and an incredible amount of information and potential scenarios were discussed - it is all too much to describe and ultimately doesn't all matter because most of it will completely depend on how our baby responds during the early minutes, hours, days and weeks of his/her life.  This is what we do know.  

 

• Our baby does have a congenital diaphragmatic hernia on the right side.

• The liver and a small part of the intestines have infiltrated the chest cavity, impeding the right lung from developing fully.

• The left lung, while slightly smaller than normal, appears to be healthy and fully functional.  

• The neonatal team will be present during my labor and delivery.  As soon as the baby is born, the OB will cut the cord and hand the baby to neonatology.

• The baby will be intubated immediately. 

• Depending on how well the baby is doing, we may have the opportunity to see the baby, but he/she will quickly move to the NICU.

• The baby will need surgery to move the liver back into the abdominal cavity and repair the hernia, but when this occurs will depend on the stability of the baby.

• We've been told to prepare for 3 months in the NICU - it could be less, but it could also be more.

• The baby will need to work with occupational therapy to learn milestones that other babies learn through day to day life - namely sucking and eating.

While this wasn't the news we were looking to hear, we were grateful to have information regarding the condition of our child as well as the plan for my delivery and for the baby.  However, it also confirmed that as parents, we are going to miss out on so many incredible experiences that other parents likely take for granted - Brian won't be able to cut the cord, there will be no skin-to-skin contact, we won't be able to hold our child for an unknown amount of time, I'll need to pump and won't have the option to breastfeed for an unknown amount of time... it feels like all three of us have pulled the short straw.  As we left the room, it all felt like a bad dream.  Again, why was this happening to us?  To our baby? I had done everything right - taken all the right vitamins and watched my diet - why??

We walked back to our car to have a much needed mental breakdown.  No matter how state of the art the medicine or how skilled a team we have access to, we are still terrified.  The final comments by our surgeon were that he is "cautiously optimistic" about our child's chances for a normal life, but the unknown is crippling.  

As we drove home, we tried to talk about all of the positives and how lucky we feel to have each other.  The team confirmed that babies who have a strong, unified parental presence thrive in the NICU.  We vowed to do everything in our power to remain strong, supportive and unified.  As soon as we got home, we felt like we needed to do something "normal", so we went out to dinner.  At one point, we both found ourselves deep in thought, locked tear-filled eyes and just started to laugh; without words, we recognized that we weren't ready for anything normal because we were engrossed in the abnormal.  

The next steps will be determined on Monday afternoon when we meet with our new perinatologist.  At that point, we will discuss the plan for delivery (natural vs c-section), including a timeline for when the medical team thinks it is ideal for the baby to be born.  

Again, we want to thank everyone for their love, support, prayers and caring words.  You all truly give us strength as we take each day with a willing and open heart to accept that this is God's plan for us and our family. 

  

"The thing about being brave is that it doesn't come with the absence of fear and hurt.  Bravery is the ability to look fear and hurt in the face and say 'Move aside, you are in the way.'"

Melissa Tumino

Baby B's First Marathon

Singing' "Don't worry 'bout a thing,
'Cause every little thing gonna be alright."

Bob Marley - Three Little Birds

Hello friends and family.  Brian and I decided to create this blog as a way to centralize information about Baby Beres.  We anticipate that the next few weeks (and potentially months) of our lives are going to be very hectic and emotional; it may be difficult to text/email everyone.  We appreciate your understanding as we do our best to navigate this joyful yet challenging time and focus on our little family.  This truly feels like our first marathon as a family...
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Nine days ago, when I was 36 weeks and 3 days into my pregnancy, we learned some pretty shocking news.  Up until that point, we had received our care with the midwifery group at UIC and we couldn't have been happier.  My pregnancy had been smooth sailing with all signs pointing to a very healthy, normal baby on the way.  However, my midwife was interested in me having one more ultrasound, just to ensure growth was on track.  While I thought she was being a little overly cautious, I didn't fight it because I trusted (and still trust) her immensely. 

Seeing that it was a simple ultrasound, I told Brian to stay home because he had to work that night.  I made the short drive less than a mile from our house to the hospital for what I expected to be a quick visit.  After about 10 minutes, the tech seemed particularly interested in getting a really good look at one part of the baby, but knowing how difficult it can be to get ideal pictures of a little human curled up in my belly, I didn't think anything of it... until the PA came into the room.  

I can't remember her name and after she started talking, it was as if Charlie Brown's mother was there - "wah waah wah wah". But phrases like "didn't develop", "hernia", "NICU" and "high risk" stuck with me.  In an attempt to not panic, I asked her to write it all down and to give me time to call my husband.  While the ultrasound showed that the baby's growth was just fine and all vitals appeared healthy, it also uncovered that our little person has what is known as a CDH - congenital diaphragmatic hernia.  This is a rare birth defect that impacts 1 out of every 2,500 live births (about 1,600 babies per year) and they don't know why it happens.  Ultimately, the baby's diaphragm (which is the thin piece of muscle that separates your abdominal organs from your chest cavity) didn't finish developing, leaving a hole.  This is bad for a variety of reasons, but mainly if abdominal organs infiltrate the chest cavity, it can impede on lung development.  The severity of this condition can range drastically from very minute to very invasive.  90% of the hernias occur on the left side of the baby, but our baby's is on the right.  Leave it to our kid to be extra special.

My mind was racing - what questions do you ask when you don't even know what you are talking about?  Was the baby going to need to have surgery?  Yes - likely right after birth.  Was I going to be able to see my midwife anymore?  No.  Could I still have a natural birth?  Maybe, but only if it happened before week 39.  It all felt like a bad dream.  This wasn't supposed to happen.  Brian was able to make to the hospital in time to be told that we would meet with a perinatologist (an OB that deals with high risk pregnancy) in a week and we were sent home.   

This is when the hysteria set it.  It felt like the world was falling out from underneath us and we were completely out of control.  Beyond the fact that we had spent months preparing for an intervention-free labor and delivery, our focus shifted to what was going to happen after the baby was born - the logistics of the delivery just faded.  I cried myself to sleep that night while my amazing husband held me, told me it was all going to be ok, forsaking his deserved gut-wrenching breakdown to be strong for me.  It was honestly the most selfless thing anyone has ever done for me. 

We spent the next couple of days trying to process the information and reinforce that we would just need to wait to get more information when we met with the new doctor the following week.  But something just didn't feel right.  It was as if we were sitting in the last row of a school bus - we had no idea who was driving or where we were going.  That's when we started talking to some really important and knowledgeable people in our lives .  After a conversation with a friend from college who is an OB and Brian's brother, Kevin, who is a physician, our focus switched from assuming our current hospital was sufficient to ensuring we found the best facility with the best surgeon we could get in front of to give our child the best shot at a normal, healthy life.  

We considered 1) Cincinnati Children's Hospital because they have a team that specializes in CDH 2) Lurie Children's Hospital in Chicago so we could have our home base and support system and 3) Children's Hospital of Wisconsin to be close to family.  We spent hours discussing the pros and cons of each scenario and facility.  When I woke up on Friday morning, something in my gut was pulling me to Lurie here in Chicago.

Brian made a call the the Maternal Fetal Medicine group at Northwestern and it was as if the stars aligned.  He connected with an amazing woman named Linda who immediately responded to our predicament and initiated efforts to help us - we moved from the back of the bus to the front of the bus.  Linda connected us with Mary at Lurie Children's and the wheels were in motion to get us the best possible team of medical professionals they could offer to care for me and our baby. 

So here we are.  Thursday, Friday and Monday I will have a series of tests, we will meet with the pediatric surgical team and maternal fetal medicine to 1) get a better understanding of how severe the hernia is and 2) what to potentially expect during and after birth.  We are doing our best to remain hopeful and not get ahead of ourselves before we have all the information, but that is easier said than done.  We feel so lucky that 1) our midwife ordered the ultrasound in the first place which 2) allowed us to make adjustments to our care team and 3) prepare ourselves for the unknown. We ask for your thoughts and prayers as we approach these critical meetings and we will try to keep this blog up to date with new developments as we get them.  

"Faith is the bird that feels the light and sings when the dawn is still dark"

Rabindranath Tagore