World Prematurity Day

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Today is World Prematurity Day. (Don’t worry if you didn’t know there was a “World Prematurity Day” -neither did I!)

The day brings awareness to the fact that each year, 15 million babies are born premature and each year, over 1 million do not survive. As a new mom (and recent inductee into the preemie-parent club) these numbers do not shock me (but they do sadden me).

While Andy & I know that Nicholas’ early birthday could not have been diagnosed or prevented any earlier than it was, we understand some early birthdays can be prevented.

If you would, take a few moments today to join us in giving thanks for the blessing that is our son Nicholas and praying for others who are on the same journey we are.

Week 6 – Weight Gains & More on The Art of Trying to Be Patient

3 pounds. 3 whole glorious, wonderful pounds. Nicholas hit another Szapacs family set milestone when he weighed in Sunday evening. We were ecstatic (and, of course Andy & I celebrated with a fist bump!)

Nicholas got his 1st out of state visitor this week – Aunt Carmen (my step-sister) came into town for an all too brief but appreciated visit. Aunt Carmen arrived Saturday from NC and spent a day and a half with us visiting Nicholas in the hospital (and soaking in some SW Florida sun!). Thanks for coming, Carmen!

On Sunday, Nicholas was still breathing on his own with only pressure support from the CPAP machine. His oxygen levels and heart rate were fine but his respiratory rates were high. And when I say “high” I mean “holy cow, that’s high.”. His respiratory rate should have been no more than 70 breaths per minute (bpm) but he was at 140 bpm at points throughout the day. As Andy and I sat with him and watched him breathing like someone who couldn’t catch their breath after running a marathon, we grew concerned.

After talking with the nurses about reasons for his high rates they explained that after he had been breathing on his own for 4 days he might be “getting stressed and tired” and diagnosed him with tachypnea. Its pronounced “ta-kip-ne-ah” and simply means someone who is a quick, shallow breather. (On a side note, the vast vocabulary I have picked up since being in the NICU should win me a spot in the scrabble world championships.)

One of the ways to help combat Nicholas’ tachypnea would be to increase the oxygen pressure on the CPAP machine and, if that didn’t work, we would have to consider the option of going back on the NAVA ventilator (which we didn’t want – we’re trying to remove tubes not put more in!)

All of this tachypnea chatter got me thinking. I remembered a day a few weeks back when he was having trouble breathing. The respiratory therapists thought having me hold him may help with his breathing. I held him for 2 hours and his rates did normalize. I didn’t want to hold him this time because his temperature was low (another sign of stress) so instead, I chose to read to him to see if it would help. I sat and read “Winnie The Pooh” for over an hour. Nicholas was alert the entire time looking around, smiling, and holding my hand while we read. As we continued to read, his respiratory rate came down within the “normal” range and, I’m amazed to say, he stayed within normal range all night long.

Over the next few days, we patiently waited tried to be patient as we watched his respiratory rate slowly even out. We pulled out our old mantra of “deep breaths, buddy, deep breaths” and sat with him day in and day out doing everything we could to help him breathe better. We continued to work with the team of occupational therapists learning new techniques to help with diaphragm muscle recall, and even sat by his bed and over exaggerated our own breathing cycles for him (a lot of deep breaths make for lightheaded parents!).

By Friday, he was beginning to show signs of progress and looking much more confident breathing. He was also showing a bit more weight gain- by Saturday night he weighed 3 pounds 6 ounces! We know that with every ounce gained more and more of his breathing will become easier and more natural so we are thankful for every ounce.

On Thursday, Nicholas got a sweet surprise. My cousin Jordan flew down to spend 4 days with us. And, let me tell you what a God-send she was for us (especially me!). I had missed her greatly since being in FL and having her here provided another piece of home that I miss.

She spent much of her time here with us traveling back and forth to the Children’s hospital and hanging with us for hours on end in the NICU without so much of a “Gee, isn’t there anything else to do in Fort Myers besides tour the NICU?” ever being uttered.

She also provided a nice distraction from our routine – she was the reason I took my first boat ride since being down here (with my own health issues and spending time with Nicholas I haven’t had much desire or energy to do much else – especially go out on the boat). We spent one morning on the boat as a family sightseeing the area from the water, putted around in the Gulf Of Mexico, and even got up close and personal with a pod of dolphins. It was a good morning together as a family. Thank you for coming, Jordan- we all love you very very much!

Week 5 – Infections, CPAP, and Occupational Therapy

Andy had to be back in NC for a few days this week. Its a hard adjustment for me when he has to travel home because what little normalcy I have here unravels (and trust me, there isn’t a lot of ‘normal’ to begin with!). Not to mention, the timing of this trip wasn’t ideal – we were in the midst of a blood transfusion ending and an infection beginning.

On Sunday, as I headed to the NICU, I learned that the blood transfusion was a success but that Nicholas’ blood work was showing signs of an infection in his bloodstream – the type of infection was yet to be determined. Dr. Sultan began Nicholas on a round of antibiotics that would last a minimum of 3 days until he could learn more about the infection and hopefully nip it in the bud before it go out of hand. We spent the next 4 days having chest x-rays and blood draws every morning to monitor the infection until Dr. Abril (our primary physician who was now back!) was confident the infection had cleared. On Wednesday evening Nicholas received his last dose of antibiotics. Dr. Abril wanted to leave his IV in for a few days to make sure the infection didn’t need anymore attention but, on Thursday morning, Nicholas managed to kick the IV out himself. Fortunately, the infection was gone and we didn’t need another IV put in. Nicholas got his way – no more IV.

On Monday, I met with the team of NICU “occupational therapists” for the 1st time. They. Are. Simply. Amazing. Through touch and massage they are able to help with muscle recall that otherwise premature babies would be missing out on since most of their muscle recall happens in the womb. I could see the difference in Nicholas almost immediately. He became more alert to our touch and voices and less resistant to medical touches (ie – blood draws, suctioning, measuring his growth). I’m thankful for their non invasive ways of helping Nicholas adjust and grow to life outside of the womb. We get to see them 3-4 times a week while in the NICU and I think both Nicholas and I look forward to their visits.

Nicholas remained on the NAVA ventilator at the beginning of the week. He was maintaining his breathing much better than he had been in the past few weeks. On Monday, I began to hear murmurings that he might be strong enough to take him off of the ventilator and move him to bubble CPAP. This would be a large step for us as he was still small – weighing on 2 pounds 12 ounces. Bubble CPAP is a machine that allows Nicholas to breathe completely on his own and provides constant oxygen pressure support to help strengthen his own breathing patterns.

On Wednesday evening as my dad & I left the NICU and were headed home for the night, I received a phone call from the NICU. Jovita, our primary nurse (more on Jovita later),  explained that Nicholas had successfully pulled his ventilator tube out of his throat and mouth for the 5th time that day and so, Dr. Abril decided to take the hint from Nicholas that he didn’t want to be on the ventilator anymore and moved him to Bubble CPAP. Just like that, one of Andy and my BIG goals was being accomplished. I understood the next few hours would be touch and go – if he didn’t take to CPAP well, he would go back onto the ventilator (and the tube would have to go back in). None of us, Nicholas included, wanted that tube back in. Thankfully, Nicholas did just fine on CPAP. The respiratory therapy team removed any sign of a ventilator from his area in the NICU and we moved forward on the CPAP machine.

Andy made his way back to Florida on Thursday evening – just in time to see Nicholas end his 1st successful day on the CPAP machine, and see our him  with one less tube and no more IVs. During our bedtime routine that evening Andy got to witness Nicholas’ 1st weight gain all week – we were now up to 2 pound 14 ounces. That was a huge gain for us considering at the beginning of the week he was NPO (no food) during his transfusion and was also on antibiotics for 4 days.

We spent much of the weekend watching Nicholas succeed on the Bubble CPAP machine and becoming more & more alert than he had been in weeks past. We know he cannot see us clearly right now but it is simply amazing to watch him follow our voices when we talk, read, and sing to him. We continue to work with him through the massage and touch tools that the occupational therapists have shared with us and are happy to see his responses growing stronger.

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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