1 month old

1 month old. Wow. It has flown by. I’d like life to slow down (but our time in the NICU could hurry up a bit!).

This past month hasn’t been easy. Not at all. It has been full of long days that leave Andy & I exhausted from the emotional roller coaster. We have laughed. We have cried. We have fist-bumped. We have prayed.

We are thankful. All 3 of us have come a long way in the past month and are stronger for it. Nicholas, although still small, grows more & more fierce everyday. As “Uncle Parker” put it one day: “This kid is a Moore. He will kick and punch and claw his way out. He will not be beaten.”.

We still have a journey in front of us but today, we celebrate just being “1”. We sang the happy birthday song more times than I care to admit. We read and we cuddled. It was a good day.

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Week 4 – Hurry Up & Wait … (& Our 3rd Transfusion)

This week was much of a “hurry up and wait” week for the 3 of us. Nicholas remained on the non-invasive NAVA ventilator. At the beginning of the week, he was receiving moderate support from the NAVA and was breathing comfortably at 36% oxygen. (To give you a comparison on what Nicholas was breathing versus what you and I breath – room air that you & I breathe is 21% oxygen).

Nicholas needed to get stronger breathing on his own so that his ventilator support could decrease and so that he could begin to breathe on less oxygen until he was breathing the 21% oxygen levels you & I breathe. We spent much of the week repeating our mantra “Deep breaths, buddy.”, as Nicholas was pushed to breathe on less oxygen. It was, for the most part, a quiet week for us. The doctors’ orders rarely changed all week long – Dr. Singh & Dr. Abril maintained the same thoughts each day: “Let’s keep him on the NAVA ventilator and see what he can do”.

But, come Saturday evening that all took a change. While on a short break from the NICU for dinner with mom & dad, I received a phone call from the NICU to prepare us for what we would be walking into upon our return. Nicholas’ blood work from earlier that day showed a decrease in his hemoglobin counts – he would need another blood transfusion immediately. They were going to start prepping for the transfusion right then and would be starting as soon as blood arrived.

Upon the news, we quickly left the restaurant and got back to the NICU (Andy finished his dinner in the car on the way back to the NICU). Once at the NICU we found them preparing to start running IVs. I was happy they hadn’t placed the IVs yet so I could be there to hold him as they searched for 2 places in his arms to set IVs (one for the transfusion and one for the fluids he would need while being transfused). After an hour and a half, the IVs were in and the transfusion began. Andy & I were an exhausted mess but Nicholas never cried – he just slept through the whole ordeal.

The transfusion ran for 4 hours overnight. As much as we wanted to stay until the transfusion was complete, we had to get home to get Andy packed as he had a flight to catch early Sunday morning back home to NC for a few days. I will admit that even though we weren’t there, we called and checked in all night with the nurses and, as a result, didn’t get much sleep anyways.

The next day, as Andy headed to the airport and I headed into the hospital, I was greeted by one of the neonatologists, Dr. Sultan. He was there to explain to me that when they tested Nicholas that morning to see if his hemoglobin count had risen (which it had – the transfusion was successful) that he did find an elevated count that led him to believe he might have contracted an infection. So, we began week 5 with several days of antiobiotics to kick any infection he may have (more on this to come).

During all of this, we find ourselves looking for reasons to laugh and places/situations that bring us comfort. Wednesday night brought us that:

While on a brief break from the NICU, Andy and I had dinner at a local bar- Bayside Grille. It’s one of those places that has lots of “regulars”, good food (nothing to fru-fru), and happy hour specials that make all of this dining out a bit easier to digest.On this particular night when we arrived, there was what sounded like a polka band set up and “rocking out” as (I guess) polka bands do. I wasn’t particularly in the mood for a band; a quick dinner so we could get back to the NICU was the top item on my menu. But, as my mother likes to tell me often “Adjust, darlin’. Adjust.”.

As the band played on though, a familiar tune started up. Andy caught it before I did and said, “Listen- do you know what song that is?”. I tried to slow my mind from its constant state of worried analysis to hear what song was being played.
As the song began to come into focus, the whole bar began to join in on the band’s fun singing “You Are My Sunshine.” It was such a sight watching large men drinking draft beers, singing, laughing, and enjoying the lullaby we sing to sweet Nicholas each night. It warmed our hearts and gave us the boost we needed right when we needed it.

Week 1- Ultrasounds, PICC lines, and Transfusions

For the 24 hours after my c-section, I was on bedrest with a constant drip of magnesium sulfate or “mag bags” as the nurses lovingly referred to them. This drip is intended to stop seizures which can be common in both preeclampsia and HELLP syndrome patients if left untreated. While on the “mag bags” and several other medicines for pain, I was essentially pain free but was in a constant state of “Gee, its hot in here. Andy, isn’t it hot? Why is it so hot in here? Can we turn the air up?”. Andy took my constant interrogations about the temperature in our hospital room in stride for those 24 hours by simply agreeing that “Yes, dear, it is hot in here.” and turning the air up. Shortly after I was pulled off of the mag bags and made my first comment about how cold it was, Andy felt vindicated and let me know that everyone else in our lives (and in our hospital room for those 24 hours) thought it was colder than a meat locker and simply asked, “Can I turn the heat on now please?”. Ah, the “joys” of modern medicine.

During the 24 hours I was on bedrest, Andy was nothing short of an amazing husband and new daddy. He hardly slept all night the night Nicholas was born worrying about his comfort and well-being since he was in the NICU and not with us in my hospital room. After several hours of worrying and tossing & turning on the pull out bed, Andy finally went to check in on Nicholas at the NICU. (Side note: I use the term “bed” loosely here as it was a hospital chair that pulled out into a cot. It was very firm and hardly long enough for Andy’s long frame to sleep on but, he never once complained. He slept there every night during our 10 day stint in that hospital room.)

After Andy’s 1st trip up to the NICU (which was at 4:30 AM), he spent the next 24 hours going back and forth between Nicholas’ bedside and mine. He quickly learned how to help calm Nicholas through touch in his isolette, changed his 1st diaper, and met with the nurses to learn as much as he could before we could both meet with the doctors. He also coordinated (proudly) how to let our family see Nicholas in shifts (the NICU only allows 3 folks in at one time to see the baby).

I should take a moment here to brag on our family, especially my brother. Parker & I have always been close. He is my best friend & my super hero. He and his fiancee Jen were traveling back from Nashville, TN when Andy called to let them know that Nicholas was on his way into the world. As soon they arrived back at their home in Charlotte, NC they booked flights to Fort Myers, Florida and were by our side within 18 hours of Nicholas’ birth (complete with smiles, hugs, and Nicholas 1st stuffed animals in tow). They stayed for 2 days dotting on our son and helping Andy anyway they could (even if it was a trip to Five Guys for burgers and a break from the constant rotation of doctors and nurses). They were (and still are) a blessing to us during such a scary and uncertain time.

On Tuesday morning, October 7th, Andy and I visited the NICU – just the 2 of us and Nicholas. Once there, we met with one of Nicholas’ primary doctors, Dr. Abril. Dr Abril is a young doctor with a calm demeanor and a love of numbers. He spoke to us about Nicholas’ current condition and his recommendations for immediate care. He let us know that overnight Monday Nicholas exhibited an “episode” that may be linked to a ruptured blood vessel in his brain and the only way we would know if that was the cause and what the long term ramifications may be was through a cranial ultrasound. He also let us know that due to the amount of blood work that would need to be done and the amount of medicines he would need over the next few weeks, that he recommended placing a PICC line in Nicholas’ arm immediately (a PICC line is a catheter that runs from his arm through a vein and lands at his heart for maximum efficiency in his treatment. Its still amazing to me that they can successfully place a PICC line in a baby that only weighs 1 pound 12 ounces). We were also told that Nicholas needed steroids for his lung capacity to continue to increase. Finally, a blood transfusion was recommended immediately as his hemoglobin counts were so low (so were mine – more on that to come). We agreed to all treatments – Nicholas was given his 1st blood transfusion that afternoon, and his PICC line procedure and cranial ultrasound were scheduled.

I’m very thankful to say that his PICC line procedure was successful on the 1st try. The doctors and nurses were now able to administer medicines efficiently through this line and are also able to take blood as needed for testing. The beauty of a PICC line for Nicholas also meant that they could put back any excess blood they may have drawn but didn’t need back into his system (which is a blessing when you consider what a valuable resource blood is to such a little baby).

Nicholas’ cranial ultrasound was scheduled for Friday. Dr. Abril told us that there were 4 ratings a cranial ultrasound could return: a 1,2,3 or 4. A 1 or 2 meant minimal damage from a blood vessel rupture. A 3 or 4 meant that the rupture was worse and would most likely lead to developmental issues further down the road. He had no guidance on what rating he thought our scan may produce and told us to just be patient and hope for a 1 or 2 (this would be our 1st of many “be patient” moments). On Friday morning after the ultrasound results were returned we are happy to report that Nicholas’ scan returned a “negative” reading which is the best reading you can receive. In short, the scan showed no blood vessel ruptures! Dr. Abril himself said he wasn’t quite sure what caused Nicholas’ episode Monday night but to be thankful there were no blood vessel ruptures.

As for me and my health, while I was happy to be off “mag bags” and able to go see Nicholas, I wasn’t feeling 100%. I was in a constant state of “woozy” – feeling lightheaded, short of breath, and still experiencing pain in my right ribcage (where my pain resided before Nicholas’ birth). After several times complaining to the nurses about the way I was feeling (they would respond with a calm “that’s normal”), I decided to tell my doctor in detail about the way I was feeling. Dr. Brown ordered an ultrasound to see if he could find reason for my pain. My ultrasound returned a “silver dollar pancake sized” hematoma or blood bruise on my liver. My hematoma was a rare after-effect of HELLP syndrome. So rare that Dr. Brown himself hadn’t seen this himself in his many years of practice so he was cautious in how to move forward.

Dr. Brown had several other doctors come see me to learn more about my condition and make recommendations on treatment. Two of my favorite doctors that we saw during this ordeal were 2 ex-military surgeons who had served in Iraq and Afghanistan. Not only were they fun to be around, they were the most down to earth doctors about my condition and my limitations while healing. They did keep me in the hospital to monitor the hematoma for a week and did order my very own blood transfusion to help with my healing but were very realistic and supportive of my desire for time with Nicholas everyday.

 

 

 

a birth {love} story.

On Wednesday, October 1st, Andy & I left our home in NC for a brief ‘babymoon’ trip to visit my mom & dad  in southwest Florida. Andy drove down from NC and I flew. Andy drove through the night Wednedsay night and arrived at mom and dad’s Thursday morning about 5 AM. We both slept in Thursday and were pretty lazy all day – fishing on the dock, swimming in the pool, and just enjoying some down time.

I began to experience discomfort in my abdomen and chest Thursday mid-morning. After a few hours of downtime and no relief, and a decreasing appetite, I phoned my doctor’s office back home in NC and spoke to one of the midwives. Based on the symptoms I was describing, she suggested taking OTC heartburn medicine and if I didn’t have find relief by the following morning to find an urgent care doctor to see before I got back on an airplane that following Monday morning. After an almost sleepless night Thursday, I did feel a bit better Friday so we decided not to worry much more and instead spent the next 2 days fishing, swimming, and exploring the Pine Island area with mom & dad.

Sunday morning I woke up with similar pains- only much, much worse and I wasn’t able to find relief on my own. By mid-morning there was so much pain in my abdomen and in my chest that it was causing me great pain to take a simple breath. Andy immediately put me in the car and took me Cape Corral ER.

{I remember on the drive over, I asked begged Andy to pull over and let me die on the side of the road. The pain was so intense, and I felt so helpless and saw no sign of relief that that was the most logical request I could make at the time.}

Once at Cape Corral ER the staff was speedy to check me in. Once I explained the pains I was feeling and let them know I was pregnant, the staff went into a new level of “speedy” that frankly, I have never seen in a hospital back home in NC. They administered some pain mess quickly so I was able to get some relief before running some tests to see the cause of my pain. Within 1 hour of being in the ER, Andy and I were met by Dr. Cowdin, an OBGYN, who removed me from the ER and took me to OB Triage in the hospital. Dr. Cowdin explained to us that I had developed HELLP syndrome, an extremely rare pregnancy disease that occurs, often times without any warning. He let Andy and I know in no uncertain terms the severity of my condition and that the only way to save mine and baby boy’s life was to deliver the baby. Now. Not in a few weeks. Not once we got back to NC. Delivery here in Florida, within the next 48 hours was the only thing that could save us.

Dr. Cowdin made arrangements to send me Golisano Children’s Hospital down the street in Fort Myers so that once baby was born, we would be at the NICU that would be best be able to handle our situation.

I was transported to Golisano Children’s Hopsital by ambulance. Andy and mom & dad followed close behind. Once we arrived, we were met by a team of nurses and PAs who quickly went to work checking my vitals and finding baby boy’s heartbeat. They were hopeful that we they could stabilize both baby and me for at least 24 hours so baby boy could receive a round of steroids that would help prepare his lungs for his arrival. As they were working to stabilize both of us, baby’s heartbeat quickly dropped significantly. At that point the lead nurse Angela (more on Angela and how thankful we are for her later) told her team to call OR and tell them we coming. Now. Not in 1 day once baby boy got steroids to help ease his transition. Now.

I was quickly rushed into The OR. Andy was not able to be in the room with me. Due to the severity of our situation, and the fact that they were placing me under full anesthesia, Andy had to wait outside. By himself. This is just one of the many examples of how strong and amazing my husband is. He held it together all day and only showed love and strength around me, his incredibly scared wife.

At 7:51 PM Nicholas Christopher Szapacs was born. He was 36 cm long and weighed 1 pound 12 ounces. Even for such a small bundle, he came out with eyebrows, eyelashes, and a full head of strawberry blonde hair. And, let me tell you how handsome he was. When we met him later that evening in the NICU, we were blown away by him. Much like his daddy, he was moving all of his limbs, feeling his face, and kicking and stretching his legs. And he looked happy. Oh so terribly happy to be here with us. And we were over the moon to have him, even if he did arrive 12 weeks early and several states away from home.

 

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why we are here

Andy & I were blessed with the arrival of our baby boy, Nicholas Christopher Szapacs on Sunday, October 5th at 7:51 PM. His arrival was a shock to both Andy and myself – not only because Nicholas would be making his arrival several states away from home but also that he was making his way into the world 12 weeks early. As Andy and I traveled to Southwest Florida just a few days earlier for a brief ‘babymoon’ and to visit my mom and dad, we had no idea that I would be diagnosed with HELLP syndrome (an extremely rare pregnancy disease) and that Nicholas would be born within a few hours of my diagnosis via emergency c-section.

We have created this blog as a place for our family & friends to celebrate with us and pray with us as Nicholas continues to grow. Many of you know that we have not shared our news on Facebook or other open social media outlets yet. We made that decision consciously and hope you can honor this decision alongside us. We want to respect Nicholas’ privacy during this very important time in his life and we choose to focus our time and energy into our time with Nicholas and his care team rather than updating folks via social media feeds. This blog is intended to share our story with you in a closed forum that is easy for us to manage and one that is easy for our close friends and family to keep up with.

Thank you for being a part of our lives. Prayers are powerful and we are thankful for yours.

-Andy & Jaclyn Szapacs