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 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.