Week 8 – Bye, Bye CPAP. Hello, Fresh Air.

Nicholas started this week on the lowest level allowable on the CPAP machine. He was breathing room air and only receiving pressure support to his lungs from the CPAP machine (and the lowest possible pressure support). He was breathing well on his own – so well that on Sunday we started to hear mumblings from the respiratory team that he might be ready to come off the CPAP machine soon. (“Soon” is a relative term I have come to learn during our time so far in the NICU).

Fortunately for us, “soon” was Monday morning. Dr. Faisal moved Nicholas off of the CPAP machine and onto a Vapo-Therm machine to help continue to stairstep him down off oxygen pressure support. This machine gives light  “open loop” support to his lungs through only 1 nostril and is intended to be the last step before all oxygen support is removed and Nicholas is expected to breathe all on his own (all of the other oscillators, ventilators, and CPAP machines have provided “closed-loop” support meaning the pressure was delivered through a nasal canula that sat in both of his nostrils). Vapo-Therm machines can be set to a variety of pressures based on the baby’s needs. We started the week at +3 liters per minute of pressure (middle of the range for the machine) and our goal was to get to +1 before he would be removed from the machine.

Andy & I were anxious to start moving down on pressure on the Vapo-Therm almost immediately. That may sound impatient (believe me, we have our “when is this all going to be over?!” days where impatience permeates all we do) but we knew that once Nicholas was at +2 we could begin to try to bottle feed him. I longed for the day to be able to hold him and feed him. And now, that day was so close I could taste it and I wanted it. So did Andy. The doctors and nursing staff made it very clear that once Nicholas was at +2 on the Vapo-Therm the last big step for us to master in order to go home was to have Nicholas bottle feed. We were now starting to openly talk about what has been big the elephant in the room for us for weeks now – “When do we get to go home? What do we have to do?”. I haven’t asked those questions out loud since Nicholas was 1st born – mostly because I was fairly certain I wouldn’t like the answer. But now, it was starting to become common conversation for everyone on Nicholas’ care team.

Nicholas stayed on +3 until Thanksgiving when Dr. Faisal gave orders to move him to +2. Andy and I were so excited because Dr. Faisal also gave orders to start bottle feeding him within 24 hours. Happy Thanksgiving to us (or so we thought). Mary, our nurse on duty on Thanksgiving,  moved him to +2 per the doctors orders and didn’t think he “liked it” so she moved him back to +3. When we arrived at the hospital to find this Andy & I were both a bit confused and frustrated. We felt like “didn’t like it” was a relative term and we wanted to see how he handled the +2 support for ourselves. She was resistant to change his pressure during the afternoon but suggested we speak with the nursing team that evening to wean him down.

So, we did. Mary may have underestimated Nicholas’ parents on this one. Between Andy’s analytical questions to the nursing team about standards for when and why a baby’s pressure support changes and his unwillingness to take “didn’t like it” as sound medical advice combined with my “We are so close, do not take this from me. Have I told you I haven’t seen my home in 2.5 months? I don’t remember what my house looks like. Oh, and I have 3 dogs which I haven’t seen. I am ready to get out of here. Do not take this from me. Move him back and lets see what he can do. Prove us wrong. I know my child is strong. ” which I tried to make come out as nicely as possible but probably sounded  more like “Put him back on +2 now. Do not question me – I am the mom. Do it now. Have you done it yet? DO. IT. NOW.” we wore the evening nursing team down. At 5 AM he was down on +2 and was doing just fine (yes, we knew it was 5 AM because we called about every 2-3 hours to “check-in” – which is a nice way of me saying we called and said “Have you done it? DO. IT. NOW.”). Andy and I make no apologies for being so pushy on this issue – we knew how important it was to continue to progress Nicholas’ care.

With +2 support, Friday brought our 1st bottle feeding trial run with Nicholas. The nursing team told us to not expect much from him and if he could eat 5 cc within the allotted 30 minute window he would be doing good. Well, he ate 12 cc within 20 minutes before he got tired (or milk drunk as some say) and passed out, bottle in mouth, in my arms. So, the next day Dr. Faisal agreed to upping his bottle feeds to 2 times a day. Saturday, Nicholas ate 17 cc at both feedings. He was well on his way to following in the Moore & Szapacs men’s footsteps of solid eaters.

Another big victory for us this week was that we were able to move out of the isolette. Nicholas had been in an isolette since he was born as it was the optimal bed for him since it had noise barriers (to reduce stress) and could control the temperature around him so he didn’t work too hard to keep himself warm. Now that he weighed 4 pound 5 ounces, was wearing clothes all the time, and was proving he could hold his temperature just fine in the isolette it was time to move him out into the world. Friday night, he moved into a Caleo bed which starts out as an enclosed bed but is convertible once the baby adjusts to room air. By Saturday morning, Nicholas went convertible and was in an open-air crib and doing just fine holding his temperature and adjusting to sleeping and waking to the sounds around him.

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Nicholas’ isolette where he spent the 1st 8 weeks.

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Nicholas’ new convertible Caleo bed.

Happy Thanksgiving!

Nicholas is now able to wear clothes since the majority of his tubes and IVs are now permanently gone and he is able to hold his own temperature.

We hope you enjoy today as much as we plan to. We’ll be snuggling with, singing and reading to, and giving thanks for Nicholas.

Happy Thanksgiving Day from our turkey to yours!

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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!

What’s In A Name?

I’ve often heard that naming a child is one of the hardest decisions you’ll ever make. For Andy & I it was a bit comical at times but, in the end, our son’s name came pretty easily.

Shortly after we found out we were pregnant, folks started asking “what names are y’all considering?”. To be honest, we weren’t. We were in the very beginning of our 2nd trimester and were enjoying just “expecting” our 1st child. We hadn’t found out whether baby Szapacs would be a boy or a girl yet (although if you asked Andy, my father, his father, or my brother they already knew- it was a boy) and I struggled with not wanting to place a definitive name on a soul I knew so little about.

As we begun to plan Baby’s nursery and learn about products other moms & dads couldn’t live without, the name discussion was never far from our minds.

I ordered a few baby name books and, each night as we sat in bed, I would read a list of names from one of the books out loud and Andy would say “yes” or “no” depending on his initial reaction. This method really got us nowhere (on a side note: if you know someone looking for baby name books I’ll happily contribute our gently used ones to their cause.).

I have always been a proponent of family names myself. Knowing you were named in memory/honor of someone who has come before, to me, is a special thing. Andy & I joked that most of my family names (Doug, Jack, Lester) wouldn’t fit well with Szapacs. Andy also had some strict guidelines as to the syllable flow of a name. (Next time you see Andy just ask him).

I remember the day we learned we were having a boy very vividly. We spent the day telling friends and family our good news (and yes, telling all the men they were right). That evening as we were winding down our day, I stood in our closet, turned to Andy, and said “Nicholas Christopher. Think about it.”. No matter what other names we came across, nothing stuck with us like Nicholas Christopher. And so, it was.

Nicholas Christopher is a named after 2 important men in our lives.

1st, Nicholas comes from Andy’s Uncle Nick. There are only a rare few folks in Andy’s life that, at the mention of their name, bring tears to his eyes. Uncle Nick is one of those people. Uncle Nick was a 2nd father to Andy seeing him through scouts, teaching him to hunt and fish and that nothing feels better than a hard days work. Uncle Nick rarely missed an event in Andy’s life- he even drove Andy to Penn State one year and helped him move into school. Uncle Nick has meant a lot to both of us – most recently he was was even our proud ring bearer at our wedding.

Now, Christopher. Christopher comes from Phil Christopher – my dad. Phil isn’t just dad to me -he is one of the best kinds of dads around- a dad who didn’t have to be. My father passed away when Parker (my brother) and I were young. Phil married my mom and became dad to a melodramatic, headstrong, girly-girl (me, of course). He sat through countless dance recitals and competitions, taught me to drive, showed me what “hard work” really meant, and is the reason I am a solid businesswoman today. (Yes, he also sat through many a dramatic “my world is going to end if I can’t have/do/be allowed this one little thing” tantrums but I prefer to skim over those parts.) Over 20 years later, he stills loves me as his own. Having him walk me down the aisle and dance on the dock at the lake with me on my wedding day are memories I will never forget.

A dear friend from work wrote me a few weeks back and reminded me that the reason we were put on this earth was the love and serve others. Amen. Nick and Phil embody her words and our thoughts – and are the perfect names for our son.

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.