Week 7 – Neurology, Cardiology, Ophthalmology, & Finding Our Own Voice

On Sunday morning, I started the week with a routine I’m getting used to but can admit I’ll never be comfortable with – Andy packed up and headed back home to NC. At least this time he had company- my cousin Jordan was on the same flight back to NC.

Nicholas started (and ended) the week this week on the CPAP machine. Thankfully though, he was now breathing much, much better than he was the previous week. Watching his small (but growing!!) chest rise and fall with each breath you could tell he was getting stronger at breathing on his own. He was still (and may very well be for the rest of his life) a shallow breather. With Andy’s asthma and my own recent realization through Nicholas’ stay at the NICU that I am a shallow breather as well, Nicholas might just come by his shallow breathing honestly. Nicholas spent the week breathing room air on the CPAP machine, only using the machine to provide pressure support for his lungs.

On Wednesday, Nicholas was visited by the neurology, cardiology, and ophthalmology teams. He had a follow up cranial ultrasound (his 1st was when he was just 5 days old) to see how his brain was developing and to chart any neurological issues that may have developed over the past 7 weeks. The scan, again, returned a negative reading – letting us know his brain was developing without any issues now or in the foreseeable future.

The cardiology team paid us a visit after our primary nurse detected a slight heart murmur on Nicholas earlier in the week. Through an echo cardiogram, we learned that Nicholas has a ASD heart murmur – a type of murmur that will clear up on its own when Nicholas turns 12 weeks old (40 weeks corrected/ at his original due date). In short, if Nicholas would have been born full term, this murmur would have cleared up instantly with his 1st breath in the world. Since he came into the world early, this part of his heart isnt developed yet – but will correct itself. We also learned that Nicholas has an extra blood vessel that runs across one of the aorta valves. When I 1st learned about the extra blood vessel, Dr Lui (one of our neonatologists) was on call and reviewed the echo results for us. He wasn’t sure what to make of the notes on the extra blood vessel  but assured us that our primary doctor that week, Dr. Faisal, would follow up on the notes the next morning and would let us know what to make of the finding. It turns out that the extra blood vessel is just “one of those things” some of us are born with.

Lastly, on Wednesday, Nicholas had his 1st eye exam. His eye exam was much like the eye exams you & I are used to. They dilated his eyes and checked for vascular growth (or lack thereof) and any abnormalities that can come with premature babies. We learned early on that when babies are on oxygen their oxygen saturation levels must be monitored closely because too much or too little saturation can lead to issues with eye development. Nicholas’ eye exam returned a near perfect score or result. (We have learned in the NICU that most tests come with scores in lieu of pass/fail results – and since Andy is such a numbers guy, this is information he asorbs quite easily). After Nicholas’ eye exam he was required to wear his ‘sunglasses’ (black foam eye coverings) for 24 hours. I think it was harder for him to wear the sunglasses than it was to actually endure the eye exam – he absolutely hated them – and showed it by continuously pulling on them (while screaming!) until he got them off (and suddenly, his screaming would stop!).

Speaking of screaming,with Nicholas’ increased lung capacity has come his voice. A voice much like his mama’s in that, when he isn’t happy, he will let you (and everyone within earshot) know. He really found his voice this week. As I sat with him through several “Look how loud I can be!” episodes, the NICU nurses who know him so well kept walking by listening for where the cries were coming from and when they got to where we were sitting would surprisingly ask “Is that really Nicholas? It can’t be”. Oh, but it was.  But it was.

One of Dr. Faisal’s goals this week was for Nicholas to pack on the pounds. In addition to his increased feedings and his ‘baby protein shakes’ Dr Faisal added in fat supplements to his diets. (On a side note, wouldn’t it be nice to have a doctor say to you “Here. Eat more fats. You need it. You deserve it. Eat. Eat. Eat.”?). Nicholas was burning calories learning to breathe and as of right now, has not inherited his mother’s ‘I just looked at that bagel and gained 3 pounds’ metabolism. Dr. Faisal would like Nicholas to gain approximately 1 pound in 1 week – a goal that seemed unlofty at first. Nicholas began the week at 3 pounds, 6 ounces. In the just 7 days that followed, he was up to 4 pounds (having gained 10 ounces!). We know that for the doctors, its a numbers game of determining caloric input versus output, which is a game they are very, very good at. I didn’t think that type of weight gain was possible so quickly but, I am thankful it was. We know that with continued weight gain, the rest of Nicholas’ motor skills, brain and lung development that is necessary to come home will come naturally. Let the weight gain continue!

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.

Happy Halloween!

Today, we celebrated Nicholas’ 1st Halloween by “dressing” up as a pumpkin (since he is unable to wear clothes yet, a pumpkin hat was all the costume we could adorn), spending the afternoon bundled up in my arms and being doted on for his pumpkin cuteness by the nurses Norma, Catherine, and respiratory therapists Kim and Sarah. He had a good day with lots of sleep, little crying, and a solid weight gain – he is now 2 pounds 10 ounces.

Nicholas’ nurses also made his 1st Halloween craft with him – ghost feet. I’ve included a few photos of Nicholas and hist “art project” below. For some of you this may be the 1st photos of Nicholas you have seen – enjoy! (I’ve also included a photo of Nicholas in one of the hats his great-great Aunt “Ruby” crocheted for him. In our family we know that love is an action verb and we are so thankful she made Nicholas several hats and his 1st teddy bear!)

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Nicholas “dressed up” as a pumpkin. 

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Nicholas’ art project he made with the nurses. 

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Nicholas in one of the hats his great-great Aunt “Ruby” made for him.