Week 3- PICC lines, IVs, De-Sats, & More Lessons in Patience

This week was a hard adjustment for me. On Sunday, Andy left to travel back home to NC for the week. He was needed back at the office for a few days, and our home & dogs needed some attention. His time back in NC meant Nicholas and I were 1:1 most of the time in the NICU. Thank goodness for my mom & dad who were on hand everyday to get me to the hospital, have dinner with me, and help with our bedtime routine in Andy’s absence.

When the nurses learned Andy would be away for a few days they gave us a great idea that we tried (and loved!) and would recommend to everyone in our situation in the future. When mommy or daddy can’t be at the bedside, FaceTime is a great resource. Each night my dad would get Andy on FaceTime and place him face down on the isolette so he could watch and hear everything that went on during our bedtime routine. While he wasn’t physically there with us he was able to ask questions, hear the latest vitals, and cheer me on during diaper duty.

We started this week much the way we ended week 2- on the NIV NAVA – a less invasive breathing support system, and on some meds and IV fluids to help Nicholas gain weight through nutrition support.

During much if the week, Nicholas struggled to breathe. A lot. We went from worrying about bradys to focusing on “de-sats” or “desaturations”. A de-sat occurs when a baby forgets to, or cannot, breathe and his oxygen saturation level drops quickly and without warning. As Nicholas was learning to breathe with less assistance than he received while on the oscillator (which essentially breathed for him before) he struggled to breathe with strength and consistency. His breaths would be quick and shallow and when you looked at him it almost appeared as though he was winded from running a race. I spent much time by his bedside watching his saturation levels go up and down and every time the alarm would ring I would find myself saying “Just take a deep breath, buddy. Deep breath.”.

Nicholas did begin to respond more and more to us this week than he had in the past. He began regularly opening both of his eyes at the same time. While I know he cannot see anyone or anything with clarity just yet, it’s wonderful to see his eyes open and look around.

On Monday, one of our doctors, Dr. Singh began to ween Nicholas from the IV fluids while he continued to increase his feeding amounts. As he continued to hold his feelings down without trouble, it was time to begin pulling him off the IVs and let Nicholas and the breast milk work together on their own. By Wednesday morning, Nicholas was pulled off all IV fluids and placed on a multivitamin he takes through he feeding tube during one of his afternoon feedings each day.

By Thursday morning, we hit another milestone for Nicholas – he had his PICC line removed. This meant the doctors saw no more need for large blood draws or for medicines that would need to be administered through his PICC line. I was happy to be able to say good bye to the PICC line machine that hung by his head and to the large lines that ran through and around his left arm.

Even though we made strides in removing more equipment from Nicholas’ care, he was still struggling to breathe. He remained on a medium level of support on the ventilator and had increased trouble breathing during each touch time and simple diaper change he experienced. The doctors continued to offer more support through increased oxygen and experimenting with his position to find him the most comfortable position.

During this entire week, I got to practice the fine art of trying to be patient. And I say “try” because it wasn’t easy for me. Each day I would come in to the NICU to see not much had changed in his support levels. I would spend much of the days and nights watching him struggling to breathe and repeating my mantra “Deep breaths, buddy, deep breaths.”.

Andy arrived back into Florida Thursday evening about dinner time. It had been a long day of work and travel for him but I was happy to have my husband back. He got to see Nicholas without his PICC line and see him continuing to open his eyes and look around and squeak out a smile. He quickly joined in on my never ending mantra “deep breaths” with me though as he saw our son struggle to breathe.

One of the most amazing things to witness (this week in particular) was Nicholas’ smile. Even though he was struggling to breathe and had some tough days, he has a way of flashing a smile that just says “give me some time. It will get better.”. That smile helped us through much of the week and the weekend as he continued to learn to breathe.

Thankful for….. Angela

In our post about Nicholas’ birth story, I mentioned what a blessing a nurse named Angela was. Since I have a few moments, I wanted to write about Angela. While I’m confident she knows how terribly thankful Andy & I are for her, I feel it important to write a bit about what an integral part she was in Nicholas’ birth if for no other reason than to save the story here for Nicholas. I want him to know that before he even appeared on October 5th he experienced selfless love and caring from a complete and total stranger – who we are now thrilled to think of as a friend.

Angela was the charge nurse on duty on Golisano Children’s Hospital when I was transported early Sunday evening. As Andy, my mom, and my dad can attest, she took charge as soon as the ambulance arrived. The original plan when I was transferred was to stabilize me on mag bags for 24-48 hours and pump Nicholas & I with steroids to help aid his growth before he was delivered. As they were trying to stabilize me, Nicholas’ heartbeat faded away.

Angela worked for a few minutes to find his heart rate and once she couldn’t find anything other than a faint heart rate under 90 bpm, she went into emergency mode. With her calm but authoritative demeanor she told her team to call OR and let them know we were on our way. She had doctors and anesthesiologists paged within seconds. On our way out the door she turned to Andy and said “Dad, follow me. Keep up.” As Andy puts it, they were all running and pushing my bed to the OR. Angela put Andy in a waiting room outside of the OR and went in with me. She never left my side, giving me encouragement while commanding orders of others around her to keep everyone as stable as we could until Dr. Brown could arrive. She was the last person I remember seeing until I woke up from the c-section. She made sure I was comfortable after surgery and made arrangements for us to go up and meet Nicholas. She gave us privacy when we requested it and support when we needed it most that night.

The days following Nicholas’ birth, she would go visit “that cute Szapacs baby” (she was one of the only nurses who didn’t need a lesson in how to pronounce our last name) and would even stop by our hospital room to give us updates on Nicholas and to see if we needed anything. And, all of this care was after we were transferred off her hall and were given to another set of nurses. She was, and continues to be, a blessing for us.

Week 2 – Arterial Lines, Another Transfusion, & The Terrifying Brady

Nicholas and I both started our 2nd week in the hospital – Nicholas took it in stride much better than I did. I was tired, uncomfortable, and while I was happy to only be 1 floor away from him, I was ready to be out from under the constant “attention” of nurses and doctors. I was beyond tired of being poked and prodded for testing. And I knew Andy was ready to go sleep in a real bed. Finally, the trauma surgeons and my OBGYN agreed I could go home on Tuesday evening. I don’t know who was happier – me that I got away from IVs and testing or Andy that we were finally able to sleep in a big bed.

Nicholas continued to make progress in the NICU. On Monday, he had his arterial line (and line that ran from his umbilical cord into his chest) removed. This line was helpful as a source in pulling blood when the doctors needed it but, as Nicholas grew and they decided that he was strong enough to come off the oscillator/ventilator and move to a less invasive “NAVA” ventilator, he no longer needed the arterial line. Removing the arterial line and moving him to the NAVA were steps in the right direction for Nicholas – it meant less invasive support and care for him and also meant we could now hold our son.

On Monday afternoon, Andy and I headed to the NICU where our nurses let us hold Nicholas for the 1st time. What a great afternoon that was. As we held his small frame against our bodies, the connection was instant. His head perched by my heart and his hands grasping my skin was a magical feeling and one that only a parent can know (I now understand the “only a parent could….” sayings).

On Wednesday, Nicholas began to have difficulty breathing and managing his heart rate with the support of the NAVA. Andy & I experienced our 1st (of several to come) “bradys” or “bradycardias” – when the heart rate dips low suddenly and without much warning. The doctors and nurses told us these were normal and to be expected in growing, premature babies.

But, when your child experiences a brady, it is simply terrifying. Alarms go off, nurses come quickly, and there is nothing you can do. As much as it may be “normal”, it is terrifying. There is no other word that describes the feeling during those times for us. Andy & I didn’t sleep too much during the following days as Nicholas began to experience bradys with frequency. Our conversations with nurses typically started out with “How many bradys have we experienced in the past XX hours?”.

On Thursday, after running some tests, the doctors decided to give Nicholas another blood transfusion to help aid him in his growth and decreasing brady episdoes. After his transfusion and a visit by the respiratory therapist to clean out his throat and nasal cavities, it was like we had our old Nicholas back. He quickly stopped experiencing bradys with the frequency he had been and we all began to rest a bit easier.

By Saturday, we had another hit another milestone. During our bedtime routine (more on that below), Nicholas was weighed and he hit 2 pounds. 2 pounds was such a milestone for all of us. The nurses laughed when they witnessed Andy & I fist bump at the 2 pound weigh-in. Andy & I set small milestones for ourselves and Nicholas so we find reason to celebrate a victory (no matter how small) each day. 2 pounds was one of our victories.

Nicholas spent much of his 2nd week easily taking to his feedings which were increasing each and every day by the doctors. Nicholas took all the increases in stride, eating whatever he was given with no tummy troubles or after effects. At the end of week 2, he was eating 18 ml every 3 hours or 144 ml every day. When you think about how small Nicholas’ frame is, that is a lot of food for such a little baby. I like to think his healthy appetite is proof of his roots: the Moore men always liked to eat. And, the Szapacs men were bred on meat & potatoes. With eaters on both sides of your family, you’re bound to grow up enjoying food.

A bit on our bedtime routine: Bedtime is an important time for us to bond with Nicholas. We spend the time at night working with the nurses to check his temperature, read his vitals, change his diapers, and feed him. We also weigh him each night and measure his belly for growth (Andy looks forward to weigh-ins everyday – he even has an excel document he completes each night to track and chart his feedings vs. his weight – I simply love my engineer husband for being able to remain analytical  in such a hectic time) . At bedtime we also change his bedding and his “heart”. We have several sets of bedding that we rotate through. We sleep with his clean bedding every night and take in that bedding the following day for him to sleep on that night. His “hearts” are simple pieces of fabric that have been sewn into heart shapes by volunteers at the hospital that we also wear on our bodies to help transfer smell to Nicholas. They are placed under his head and neck as a pillow each night. While he is in the NICU, we know that he can bond via smell with us which is why we sleep with his bedding. Even though he isn’t at home, we want him to know what home (and mom  & dad smell like). It has helped his bonding with us already.

(I try to make sure his hearts match his bedding as best I can each day – sometimes he is a color coordinated dream and sometimes his bedding takes on a shabby chic feel. Andy chuckles at me fussing over his bedding but it is one of the only things I can control right now. And, in a time of uncontrolled chaos, I’ll cherish what little control I have over Nicholas’ comfort.).

We also end each day with Nicholas singing our song “You are my sunshine”, ( I sang this song to him while he was in utero so it seems natural to continue to sing it now) and saying our prayers. Bedtime prayers seem like the most fitting way to leave our son each night in the care of the nurses of the NICU and it makes our travel home a bit easier. The hardest thing I do as a mother every night is leave my son at the NICU but knowing he has bedding that smells like home, and that he hears mom & dad singing and praying with him before he falls asleep with a full belly makes my time away at night a bit easier. Not much easier, but every bit helps.

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.

 

nicholas foot

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